Friday, October 31, 2014

The Special Blogger Weekend Link-up: Quit eating the kids' candy and post

It's the Halloween edition of the link-up—time to quit raiding the kids' candy stash and share a post. FYI, posts are fat-free, gluten-free and sugar-free.

What to do if you're new here

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

Like this: Goodnight Moon: Special Needs Edition

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

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

Happy linking!

Thursday, October 30, 2014

Goodnight Moon: Special Needs Edition

Goodnight room
Goodnight moon
Goodnight cow with walker jumping over the moon 
Goodnight accessible-switch light
And the red balloon
And the $19 big-handled spoon
And the potential new O.T. who promised to call soon

Goodnight straw honey bear
Goodnight adaptive seating chair
Goodnight noise-reducing headphones
Goodnight keyboard he likes to bang on...groan
Goodnight kittens
And goodnight ill-fitting mittens

Goodnight clocks
Goodnight extra-long foot brace socks
Goodnight sensory-friendly bite blocks
Goodnight EpiPen
Goodnight laundry pile (times ten)
Goodnight to his BFF, the TV
And goodnight to the picture he colored and signed—squee!

Goodnight DAFOs
Goodnight forms for HMOs
Goodnight overpriced enabling toy
Goodnight therapeutic exercises I skipped, oy
Goodnight meds
Goodnight depressing special needs guides we should shred
Goodnight big blue exercise ball
And goodnight living room where we first saw him crawl

Goodnight comb
Goodnight brush handle made more graspable with foam
Goodnight toothpaste (eeep, did he swallow it?!)
Goodnight shirt tag that made him pitch a fit
Goodnight IEP
Goodnight foods that are gluten-free
And goodnight fire truck/car wash/purple/spaghetti obsession, OMG

Goodnight storyboard
Goodnight chunky crayons that I hoard
Goodnight 300 sippy cups I bought to help him drink independently but none work
Goodnight gloomy doctor who told us he'd never walk or talk—jerk!
Goodnight heavy-duty bibs
And the Easy Reader books I love (OK, that's a fib) 
Goodnight starch-thickened mush
And goodnight to the old lady
Who used a communication app to whisper "hush" 

Goodnight stars
Goodnight kicking the chair
Goodnight saintly therapists and teachers everywhere

Requisite disclaimer: This book doesn't actually exist, but it's all real

Wednesday, October 29, 2014

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

Once a year, on my blog anniversary, I make a blog wish. This one is pretty simple.

When I started Love That Max in 2009, one thing I hoped to do was inspire parents of younger kids. I felt so anxiety-ridden when Max was a baby, and hearing about the accomplishments of older kids with disabilities reassured me like nothing else could.

Max is now that older kid. (Although, amazingly, I myself am not aging at all!) And it would make me very, very happy to hear what insights, perspective and hope he's given other parents. If you do not have a kid with special needs, well, I'd love to hear what Max has taught you about special needs, another key reason why I write. 

Max never had a choice in being the focus of this blog; I made it for him. Someday, I would like for him to understand just what kind of impact he has had. So, actually, I have a second wish here: I hope that he will be able read this blog. Feel free to address your comments to Max.

Tuesday, October 28, 2014

The cognitive development: so hard to track, so gratifying to see

"I see big changes in Max's cognition," the photographer said to me. For the last several years, we've hired Yasmeen to do a family photo shoot in the fall, so she's known Max since he was 8.

I asked what she was seeing.

"He's directing me what to do!" she said. And, indeed, Max was. The deal I struck with him days before the shoot was that he would do a bunch of photos without the ever-present Fire Chief plastic red hat on, and then we'd finish up at the fire station with the hat on. Only Max had other ideas, and for every single place we stood and struck a pose in the park, we had to do two versions: One with the hat, one without. There was no getting around it, so we just went with the flow (generally good advice for parenting a kid with special needs).

Yasmeen had told us she only wanted to shoot in the shade, because the lighting from the sun was too harsh. Soon enough, Max was dashing ahead of us and finding shady spots. Hat on, snap, snap, snap. Hat off, snap, snap, snap. Hat back on. Like he was a model on a shoot or something.

Her comment made me happy. The unsolicited ones are the best, especially coming from people who don't see your kid that often and who truly notice the changes. Observations about Max's cognition are particularly welcome. Max has plenty of smarts, something that people don't always readily perceive because of his speech challenges. Me, I wonder a lot about what's going on in his head. His iPad has enabled him to share more thoughts but still, I know there are many more. His cognitive development is a mystery waiting to unfold.
Max has made some great cognitive leaps forward this year. The reading and math comprehension are progressing; I see it in the school progress reports, too. He understands more of what Dave and I talk about, so that we can have good conversations (even if they are usually about fire stations). And his curiosity is thriving; he now regularly asks "What's that?" whether it's regarding a box that came in the mail or buildings we drive by. This is particularly heartening; kids learn so much from wonder. Adults, too. 

Max also has a high emotional IQ, which can be every bit as important as good old IQ. He is very perceptive about moods. Dave and I had an argument while we were all out to lunch this weekend and as I shot him a look, I noticed Max watching me. He gave me this little wave, which he does when he wants me to laugh, and I obliged because it's just too cute to resist. It broke the tension. Max knew just what to do.

Lately, Max is interested in exploring his past. Saturday morning, he got up at 6:15 a.m. and when he tried to wake up me and Dave and we told him to go back to sleep, he wandered back to his room and turned on the light. I figured he was playing with fire trucks, but when I went in to check on him a half hour later he was sitting on his bed, flipping through one of his baby photo albums.

Years ago, when Max got his stem cell infusion at Duke University, we saw a pediatric neurologist there who commented on the brightness in Max's eyes. I've always seen that light, as have friends, teachers and therapists. I see the smarts emerging in little ways every single day. Yasmeen the photographer only sees Max once a year. And it is so gratifying that, through the lens of time, she can see the progress.

Photograph/Yasmeen Anderson

Monday, October 27, 2014

Are you on Team Disability or not?

Are you on Team Disability?

Here's how you qualify:

• You have a child with disability
• You are a person with disability
• You know a kid or an adult with disability
• You don't know anyone in particular with disability but you get it 
• You respect people with disability, and do what you can to encourage that
• You include people with disability in activities or wherever, and do what you can to encourage that
• You care about breaking down barriers that prevent kids and adults with disabilities from fully participating in life

Not so hard, right? There's just one more qualification:

• You don't spread negative perceptions about kids with disabilities—or deride other parents' efforts to help their kids

Now, you would think that parents of kids with special needs would automatically be on Team Disability but, sadly, that's not the case. I was reminded of that over the weekend as I read through comments on Parents' Facebook page. I'd put up a post on the site about a petition started by a mom of a girl with Down syndrome to get Disney to create a character with DS because, the mom noted, "When I see her mesmerized by Disney princesses, it breaks my heart to know she has no role models like herself."

It seemed like a great wish. Ariel in the Little Mermaid wanted to be part of this world—exactly what kids with DS and other special needs deserve. Then I read the comments. And lo and behold, the one with the most likes (since erased by the woman who left it, who said she has a child with special needs) noted that she was against the idea because Disney characters are, after all, imaginary. As she wrote, "No, the world can't accommodate for everyone... Disney is unrealistic for a reason." (You can erase your comments, but Google doesn't.) When I pointed out that Disney creates characters who are racially diverse and that diversity should include people with disability, she responded with a virtual eyeball roll over being "politically correct."

Um, what?! Expecting inclusion for kids with special needs is being PC? There's no need for Disney movies, any whatsoever, to reflect the gorgeous array of people that exist in reality? Whoa.

Perhaps you think that Disney creating a character with disability wouldn't make any difference or you're concerned, as one mom noted, that it would be based on stereotypes. So be it. But when you air thoughts in a public forum that make children with special needs seem like a whole other species of human being, or push for non-inclusion, you set back progress the rest of us make for our kids.

Oh, yes: You do.

It's awful enough when people air their biases toward people with special needs or make clueless Facebook comments like, "Why do special needs kids need a special needs character to look up to?" It's doubly awful when biased comments come from parents who have a child with special needs. Not only are you not on Team Disability, you are playing opposition.

Divisions exist in the special needs community; divisions exist within diagnoses themselves. But it seems like there is one thing we should all be able to come together on: We need to do whatever we can to spread the word that kids and adults with disability deserve respect and recognition—and to be treated like any other people.

Our kids already face so much stigma. We have to try our best to purge it, in our real-life circles and in social media. Help people see the ability behind the disability. Help people understand that people with disabilities need parity, not pity. Tell it to the sweet lady at the dry cleaning counter who looks so sadly at your child. Tell it to your neighbors who keep their distance from your kid. Tell it to the person who won't accommodate your kid in an activity or program. Tell it to the world.

But if you are going to take a public stand against what the rest of us are advocating for—no, fighting for—well, then, parents like me are going to call you on your small-minded, backwards POV. And we are going to pity your children.

Team Disability: You in?

Friday, October 24, 2014

The Special Needs Blogger Weekend Link-up: Hi! Waving!

Glad to have you back! [Jumps up and down in seat.]

What to do if you're new here

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

Like this: The ghost of the child you expected yours to be

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

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

Happy linking!

Thursday, October 23, 2014

The ghost of the child you expected yours to be

The moments always take me by surprise. It happened the other week, when Sabrina and I went to see Alexander & The Horrible, Terrible, No Good Very Bad Day. The movie's pretty funny, and we laughed a lot. At the end, Alexander has a birthday party and his parents wish him a happy twelfth birthday. Suddenly, tears started rolling down my face. Because Max is going to be 12 in a couple of months, and it was one of those moments when I thought, I wonder what he'd be like at 12 if he hadn't had the stroke. As I wrote on Facebook, "It's that total disconnect between loving the kid you have—the Wonderful, Awesome, All Good, Very Great Kid—and wondering about the kid who never was."

Birthdays have a way of bringing out the sadness. Last year, before Max turned 11, I found an old video from his birth, wrestled with the residual grief over what happened to him and accepted that it will probably always be part of me. The trauma I went through when he was born that I occasionally relive is no reflection of my love for him.

Max, he is no trauma. Just the opposite: He brings me a whole lot of happiness. Which is exactly why it throws me when my mind considers a different version of Max. It seems incongruous to love a child so fiercely and still imagine what other child he could have been. Not once have I ever imagined having a different Sabrina.

Also disconcerting: I am so proud of the progress Max has made and what he has achieved. I have learned to not judge him against his peers' development because he is Max, a kid who does things on his own timeline. And yet, I end up comparing him to some apparition of a child he could have been.

One minute, you're fine. And the next, a couple of kids walking home from school cross the street in front of your car and suddenly your brain is spiraling into that place where the what-ifs and the would-have-beens lurk. I'll wonder what Max would be like if he was a kid who could walk home from school with a friend. Or if his speech was clear. Or what activities or sports he might be into if he didn't have cerebral palsy. I have never actually heard that ghost child speak in my head, but I have envisioned him dunking basketballs into the hoop outside a neighbor's house.

It seems like a lot of special needs parents are haunted by these thoughts, as evidenced by the Facebook comments. Maria spoke of watching a niece, the same age as her 9-year-old son with special needs, buy chapter books at a book fair. "I immediately thought of James," she said. "I had picked out a simple Lego leveled reader for him. Once again, I was in my car crying." For some moms, visions of the other children come to them at night: "I will dream Sebastian walks into my room or says 'I love you' with a speaking voice and words he doesn't have," said my friend Kara.

The ghost never lingers long. I feel a little drained once it's gone, but then I get it together. I know the drill. Like the upset that I get when I think back to the NICU, this also has to do with latent grief. A part of me still mourns the child I expected, even as I worship the child that I got. This isn't about Max—it's about me.

Perhaps the passage of time will exorcise that ghost for good...or not. Maybe it will always be one of those special needs parenting things. Maybe having aired this will help. Maybe one day Max will see me having a moment, slap me upside the head and type out on his iPad, "Get over it, Mom!"

What I do know is that coming home, giving your child a hug and feeling the warmth and solidity of his body next to yours is just what you need to return your head and heart to reality.

Wednesday, October 22, 2014

One thing to do that could save your life

Finding time to take care of yourself when you're raising kids isn't easy. Some days, just remembering to pop a multivitamin feels like a victory. But there's one health thing you need to do that you may not be, and it could save your life: a skin check.

Melanoma, the most deadly form of skin cancer, is on the rise. Catch it early and it's most likely to be cured. But only about 18 percent of women have ever had a skin check, as I found out when I edited a piece for Health magazine, Are You Getting A Good Skin Check? Last night, I attended the 2014 Skin Care Foundation Gala because the piece was a finalist for a Skin Sense Award, in recognition of public education about sun protection and skin cancer protection. (Master of Ceremonies: Taye Diggs. Entertainment by: Sting and Joshua Bell. Squee!)

Besides getting an annual exam from a reputable dermatologist, you should also be regularly eyeballing your own skin (here's a good tutorial, it takes maybe five minutes). Some motivation: Half of all melanoma patients noticed their own cancerous moles first, according to one study from Memorial Sloan-Kettering Cancer Center. If you're like me and had one too many sunburns when you were younger, or you have skin cancer in your family or other risk factors, or you have a pulse, you need to get on this.

I was proud that the article was nominated, but it was already a win because friends have told me that after reading it, they got skin checks. Will you?

For your viewing pleasure:

Tuesday, October 21, 2014

Baking pumpkin pie isn't easy, but someone's got to do it

Often, when I ask Max if he'd like to do an activity or read a new book, his first response is "NO!" That's what happened this weekend, when I asked if he wanted to bake a pumpkin pie. I told him we could make one for him (he's the only one in our family who likes it—the rest of us are apple pie people), and one for his firefighter friends at the local station. 

"No!" said Max, as expected.

Max has powered through a whole lot of challenges in his life, including walking, learning how to ride a bike and using his fingers to pick up objects (aka the pincer grasp). As he's gotten older, though, I think he's realizing how much fine-motor effort is involved in tasks like baking and focus is required for reading, which is still an emerging skill. Max has more use of his left than his right one but still, holding spoons and kitchen gadgets does not come easy to him. It's so much easier to, say, sit around and watch YouTube videos of fire engines zooming to fires. Not that I know any kid like that.

Of course, I had ulterior motives with the baking—I wanted him to use his hands, or at least one of them (when he has to do tasks, he ends up in a Napoleon Bonaparte pose in which he rests his right hand on his belly as his left does most of this work). I also keep hoping that one of these days, he'll enunciate the letter "p." Double letter bonus for pumpkin pie.

"Come on, Max, are you sure you don't want bake two pies? And bring one to the fire station?" 

I've found that if I persist, he'll usually reconsider.

"No!" he said. And then, a few seconds later: "Yeah!" 

It was a no-brainer recipe—eggs, pumpkin purée, a ridiculously overpriced canister of pumpkin spice, pie crust. Max helped me measure ingredients and did all the stirring, and because I doubled the batter it was a little harder [insert evil parental cackling here].

That voice in the background saying "umpin eye" after I asked "Max, what are you making?" is Sabrina. Because, siblings.

Twice as nice

He said, and I quote, "Mmmmm...." 

Special delivery

Max himself had some ulterior motives, because as we were about to walk into the fire station he informed me that he'd like to stay there and eat the pie with the firefighters. And I was all, "No, we are dropping it off, you have a pie at home you can eat—this is for the firefighters!"

So he handed over the pie (using two hands!) and he was very proud of himself. Then he was off and running to write his name on the call board, check out Ladder 31 (his favorite) and talk about the meaning of life with Firefighter Connor.

My next goal: Teach him how to make dinner. What great therapy that would be!

Monday, October 20, 2014

The amazing two words a kid said about my son

"Why can't he talk?" the boy asked.

We'd gone to temple last week for the Jewish holiday of Simchat Torah, and Max and I were hanging out in the playroom with some other kids. Max was pushing trucks around, making a fire engine sound and pretending to crash them, and I was thinking about how amazing the imaginative play was because he hadn't wanted to play with trucks when he was little.

A couple of kids were standing nearby. Max looked at them and asked a girl her name. She told him; she was about 8. He asked the boy, and he said his name. He was 7. Then he asked why Max couldn't talk.

I said my usual: "He does talk! He just talks in his own way."

And then, the girl said "He's unique!" 

Just two words, but they made my heart smile.

"Yes, we all are," I said.

I regularly explain Max's speech to kids. I matter-of-factly respond to kids and adults who ask me "How old is he?" as if Max weren't there with "Ask him!" Paving the way for conversation and interaction with other people is part of the special needs parenting gig. As Max gets older, I hope he'll forge more connections on his own but for now, I step in to help.

Still, it is so heartening when I am not the only person in the room who gets it. When it's clear that a child's parent has spoken with her about kids with special needs—or just that children come in all flavors. When it's obvious that a kid or adult needs no explanation.

I have come to expect the questions; it's natural for kids to ask about kids who aren't seemingly like them. I don't mind at all when adults want to discuss Max, including strangers, especially since it's preferable over staring. I do not condemn people who seem unsure of how to act around Max or who give him sad looks; before I had Max I was a person who mostly felt pity for kids with special needs. (Although I take serious issue with people who blatantly gawk). But what a thrill it is when you can step back from your role as your child's spokesperson because someone else is doing it for you.

It's rare. When we've been at playgrounds or parties, I've overheard parents telling their kids not to stare but not saying anything else beyond that. I'm usually the one to say, "Come say hi!" It's that simple, as I've said before—start with "Hi." If I'm chatting with kids and their parents are standing right there, I'm almost always the person trying to help make them comfortable with Max and coaxing along conversation with suggestions like, "Ask him what his favorite movie is!"

Perhaps other parents let me lead the way because they figure as Max's mom, I'm the expert. Sure, I am, although there is no previous experience required to help kids connect with each other. Max may seem different, but aren't we all? Every person is unique, that beautiful word that girl used. All kids communicate in their own unique way, move in their own unique way, think in their own unique way. That's a great message to share with children. (Or as Deepak Chopra once said, "Each of us is a unique strand in the intricate web of life and here to make a contribution.") (Not that you need to quote Deepak Chopra to your children.) (This is actually the first time I've ever quoted Deepak Chopra.)

Another great message : A kid is still a kid. There's a mom I know in our neighborhood who has always treated Max like any other child, inviting him to join in bike races or simply asking "What's up, Max?" when she sees him. (Or, more recently, "What's up, Fireman Max?") I wish I could take this sort of thing for granted, but it's not the norm. I am always grateful that to her, he is just another kid. Who happens to wear a plastic red Fire Chief hat at all times.

As parents of kids with special needs, we are advocates for our children every single day. Each of us helps the people in our circles, and others we meet, to better understand kids with disabilities, accept and respect them for who they are and welcome them. Do we get weary of it? I do, at times. Not from the ceaseless effort but because I know that my boy is all sorts of wonderful, and I ache for other people to readily see that, and not just the disability. I would like to have the world on his side. Or at least other parents on my side, helping me teach their kids. 

When you meet kids and adults who are already on your team well, then, you feel just a little less alone—and a lot more hopeful. 

Friday, October 17, 2014

The Special Needs Blogger Weekend Link-up: Put 'em up!

Welcome back to another weekend of spectacular posts.

What to do if you're new here

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

Like this: On not letting your kid's obsession drive you to pinot grigio

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

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

Happy linking!

Thursday, October 16, 2014

The thrill of doing absolutely, positively nothing

After work last night, I zoomed home, grabbed Max and took him to a local soccer clinic for kids with special needs. High-school volunteers were there to help and Max walked right into the din, said hello to his volunteer and gave a ball a strong kick. It was rather awesome. He'd even taken off his Fire Chief hat, which was a feat, but only because it was raining outside and he didn't want it to get wet. After I tucked him into bed and organized the Girl Scout vests and pins into bags for each kid in my troop, I sat down at the kitchen table. And all I could do was stare into space.

"WE ARE DONE!" said my brain and body, and for once, I listened to them. Nighttime is usually when I do approximately eleventy billion things—put away laundry, de-clutter the house, fill out forms for the kids, email teachers and therapists, check the kids' school websites, change the burned-out bulb wherever, clean up obvious dirt, sort through mail and figure out how to deal with the fact that Cigna sends me claim denials that request information that is right on the bill while I ponder why they hire staffers who cannot read. I view every free moment as an opportunity to do something.

Sometimes I veg in front of the TV but I'm always simultaneously doing something else, like writing or answering emails. I am an accomplished multitasker who takes pride in being productive, to the point where I forget that I am actually human. Because I never, ever stop and do nothing at all. I mean while I'm conscious, because I haven't yet figured out a way to multitask in my sleep.

So I sat at the kitchen table, no laptop or pile o' paperwork in front of me. I stared into space. Briefly, I considered various upcoming kid activities and to-dos. This parenting thing is exhausting, I thought. A couple minutes later, naturally, I felt compelled to go on Facebook and see how many parents zoned out at their kitchen tables and pondered the same. And wouldn't you know it, yes! An impressive 223 other parents did—some, even every night. I figured my other 6637 Facebook friends were too busy multitasking to answer. 

I returned to staring into space. It occurred to me that I couldn't remember ever sitting at the kitchen table or basically anywhere in the house and not doing anything. I lack what yogis and meditative types call a "quiet mind." It's more like a mind that looks like one of those whirling blenders in infomercials that chops everything, including possibly wood for your fireplace.

I can't recall most of what I thought about as I sat there and visited with my brain but after a while I felt a little peaceful. There was a passing moment when I considered getting a snack, except lassitude kept me pinned to the table. There was also a horrific moment when I realized that earlier in the day I had put my mother on hold then never called her back, but I figured she would still love me and that it was important to focus on doing nothing while I was in the zone. 

I put up my feet on one of the kitchen table chairs. I did some more nothing. Then some more. I savored the fuzzy feeling in my brain. My body considered sending out a thank-you note to myself for letting it do nothing. Dave was away on a business trip and so there was nobody to interrupt me doing nothing with those endearing words, "Honey, did you pick up the dry cleaning?"

When I finally pulled myself away from the table, maybe 20 minutes had passed but it felt like longer. I celebrated my feat of doing nothing by going to sleep.  

I don't plan on scheduling "nothing" into my calendar, but I'd definitely like to do more nothing in the future. Turns out I'm pretty good at it.

Wednesday, October 15, 2014

On not letting your kid's obsessions drive you to pinot grigio


When I say that Max will only respond to "Fireman Max," I am not exaggerating. If I ask him a question or make a request, he will not look at me or even deign to tune in until I address him as "Fireman Max." So, I do. It's no biggie.

When we meet someone new and they say "Hi, Max!" I immediately note, "He likes to be known as Fireman Max." Also not a biggie.

Letting him watch YouTube videos of firetrucks while we're at restaurants to keep him calm: Sure thing.

Singing the song I made up about Fireman Max multiple times while I am driving in the car: Not a problem. Especially when I can make up refrains like, "Fireman Max! Fireman Max! He's going to put out fires with chocolate milk when he grows up!" and get some great giggles from the back seat.

Buying him fireman pj's even though they're a tad on the small side: You betcha. Too cute. 

Figuring out new and innovative ways to incorporate fire themes into his "Word of the Week" homework: Of course! It's educational! (Sample: "If Fireman Max writes a book when he grows up, the index will list a lot of firefighters.")

Permitting him to pull the Fireman Max red shirt out of the laundry my friend Steph gave him and wear it for a second day: Yep. Heck, other male members of the family do the same with their favorite shirts.

Convincing him that a certain body part is like a "hose" and he needs to aim that hose into the toilet and not spray it around everywhere: Oh, yes. I did.

Making a photo book for his birthday that, per his request, can only contains photos of him in his fire hat, and no pics of me, Dave or Sabrina: OK, then!

Wearing his plastic Fire Chief hat at all times except to school, bath time and bed: whatever!

But then: 

Visiting the fire station multiple times in a weekend: Nope. We have a rule: Once per weekend. And maybe, just maybe, a drive-by. Or two.

Listening to him have a meltdown because I showed him a video of a firetruck I taped as I was walking to work only, tragically, he was not there: NOT. ENGAGING. Please!

Letting him wear the Fire Chief hat during the entire session with the photographer we hire every year to take family photos: Nuh-uh. The deal: Most photos without the fire hat. A couple with it on, snapped in front of the fire station.

Letting him make siren sounds as he sits at the kitchen table and watches fire truck videos on YouTube: Only until I can't take it anymore. I'll pretend to throw this big switch and tell him that I've turned him "off."

Buying him yet another roy fire truck: Not happening, unless they make one that prepares dinner.

Being asked to turn off Springsteen in the car to sing the "Fireman Max" song: Just, no.

Buying Max a fire station: Yeah, right. I am nowhere near as saintly as the parents of a 13-year-old with Down syndrome in Bismarck, North Dakota, who recently purchased a coffee house to ensure that their son (and other people with disabilities) had a place to work in the future. 

Parents, of course, aren't supposed to kowtow to their kids. But when you're dealing with an obsession and a child whose brain seems to thrive on them, you work with it. You let stuff slide that doesn't much matter and you draw limits for your kid, your family and you. You celebrate that the firefighter obsession is far less costly than the car wash one. And maybe, just maybe, you enjoy an occasional evening glass of pinot grigio.

Tuesday, October 14, 2014

An extra chromosome does not define people with Down syndrome: Love this video

Students at James Clemens High School in Madison, Alabama, created the video below in honor of the state's Down Syndrome Day; it's also National Down Syndrome Awareness Month. Their video has great messages: that people with Down syndrome are, in many ways, just like people who don't have DS. And that being born with one extra chromosome does not define people with Down syndrome.

They're both messages that apply to all kinds of disabilities. 

Tight muscles and motor skill challenges do not define kids or adults with cerebral palsy.
Socialization or sensory differences do not define those with autism.
Being unable to hear does not define someone who is deaf.
Being unable to see does not define someone who is blind.
A missing limb does not define limb-different people.
Challenges with reading or learning do not define people with learning disabilities.

Our children are so much more than their special needs, and videos like this elevate them all. Props, James Clemens students.

Monday, October 13, 2014

A Wendy Davis ad attacks Greg Abbott using...his wheelchair. Really?

Wendy Davis, the Democratic candidate for Texas governor, has come under fire in recent days for a television ad about Greg Abbott, the Republican contender. He's been in a wheelchair since a 1984 accident left him paralyzed. 

The ad, titled "Justice," opens with a shot of a wheelchair and a voice-over intoning, "A tree fell on Greg Abbott. He sued and got millions. Since then, he's spent his career working against other victims." The ad goes on to depict how he has opposed that people in similar unfortunate circumstances get justice themselves. Here, see for yourself:

A spokesperson for Abbott has said the ad shows a "disturbing lack of judgment" and is a "historic low for someone seeking to represent Texans." Meanwhile, Davis's communications director told The Huffington Post, "What this ad shows is that after rightly seeking justice for himself, Greg Abbott turned around and spent his entire carer denying that same kind of justice to other victims...." and also noted the ad raised "legitimate questions." 

Whether or not you like Wendy Davis (I became a fan after her famous 2013 filibuster) is irrelevant; we should all be disappointed by this ad. This is a major misstep for a candidate who's had a good reputation. Claiming opponents are two-faced toads who made wrong decisions is nothing new in politics, but playing up someone's disability is just plain vile. The ad may as well had the voice-over say, "This man has a disability, do you really want him for your next governor?" 

I also disagree with the premise of the ad. Just because Abbott has a disability does not mean he has to be the de facto hero of "victims" (wording from the ad). Also: They're associating "disability" with victimhood. NICE. If Davis wanted to point out his disappointing track record with tort reform, she certainly could have done it without playing up his disability.

An Associated Press reporter pointed out that Abbott himself has drawn attention to his wheelchair, with spots in which he discusses his recovery and even one in which he rolls past cars stuck in traffic. But it wasn't as if he was trying for the pity vote—in fact, it seems, it's just the opposite. An online friend of mine, Marcy, who has spina bifida and is a paraplegic, put it this way:

"His use of the wheelchair is fair. Not because it shows he's overcome challenges, because everyone who gets out of bed has done that. But using the wheelchair in ads shows potential voters he's as capable as any other candidate. Without making that clear, it's too easy for people to assume archaic stereotypes regarding disabled persons. As much as we'd all like to think societal views have evolved, they really haven't. Today's wheelchair-using candidate must have the same fears about people's erroneous assumptions that prompted FDR to avoid been seen using his chair."

Slamming a candidate who happens to use a wheelchair: Bring it. It's an election. Slamming a candidate for having a wheelchair is hitting below the belt of the worst kind. 


I would like to share info that comes courtesy of Robert Rummel-Hudson, a writer I've long admired who happens to live in Texas. He's pointed out to me, as have others, that Abbott has attempted to block implementation of the Americans with Disabilities act, and he shared the following snippet from the website of the Coalition of Texans with Disabilities. While I continue to find the ad to be in poor taste, Abbott's troublesome ADA history is worth noting:

Abbott is selective. His contention is that only the State has immunity from acts of discrimination under the ADA. Private businesses, Texas cities and counties and even federal actions within Texas are all subject to the ADA. His position is not the consensus of his fellow attorneys general.

Friday, October 10, 2014

The Special Needs Blogger Weekend Link-up: Le place for le posts

Bon jour! And that is pretty much the extend of my French. But s'il vous plait, link up to something great you've written this week or that you read on another blog.

What to do if you're new here

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

Like this: 5 secrets of special needs parent happiness

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

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

Happy linking!

Thursday, October 9, 2014

Great news about cerebral palsy, and some not-so-great news

It's cliché but, hey, let's start with the good news (because it really is good). Teens with cerebral palsy rate their quality of life pretty high, per a new study—the first of its kind—published in the prestigious medical journal The Lancet.

British researchers had 431 adolescents with cerebral palsy, ages 13 to 17, from nine European regions fill out a questionnaire. Then they compared the answers to those of young adults in the general population. Teens with CP rated their overall quality of life as comparable to that of peers without CP. And they reported better quality of life than their peers in five areas: moods and emotions, self-perception, autonomy, relationships with parents and school life. As the lead author noted, this study challenges "the widespread perception that adolescents with disabilities have unhappy, unfulfilled lives."

So there's that. And then there's this: The only category in which teens reported their quality of life as significantly lower than others was in the category of social support from friends and peers.

I wasn't surprised, based on my experiences raising Max and what I've heard from other parents who have kids like him. But I was bummed to read a statistical finding on it.

For a kid who is amazingly friendly and social (and charming and giggly, sorry to gush, I'm his mother), Max does not have non-disabled friends. A lot of this have to do with going to a special needs school, but it's also because being a kid with cognitive and physical disabilities can be very isolating. It's not like Max can jump on a skateboard and cruise the neighborhood with the other kids who live nearby, shoot hoops with them or do any number of active things the kids around here do. Still, it's not only about a physical divide; the other kids are nice to him but just aren't interested in hanging out, probably because they have such varied interests. They want to talk games and sports and tech stuff. Max wants to talk about being a firefighter when he grows up. Meanwhile, I am partly to blame because I have never put a lot of effort into initiating friendships; getting Max to progress physically and cognitively has been all consuming.

The blessing is that Max does not care about this lack of friends—he is content with the life he has. I am of the mindset that he just doesn't know what he's missing and if he did, he would mind. I sure do.

I think having a variety of friends is important to him not just socially but for his future. Last year, I saw the documentary Certain Proof about three kids with CP in a public school and the challenges they face. This quote from an expert has stayed with me—or, rather haunted me: "If these children with severe disabilities are educated in a completely separate environment, they will never have opportunities in the community when they leave and they will have to have systems of separate service delivery for the rest of their lives."

Inclusion in our local school isn't the right setting for Max at this point. I'm not sure it ever will be. So I really have to do more for him socially. I need to figure out ways to enable friendships. Real ones. I've been thinking about putting up a note on my neighborhood Facebook group asking parents to encourage their kids to hang out with him. Or throwing out a request for playdates on my local moms group e-loop. I do not want to make this seem like a charitable deed, because Max is not a charity case, but there is really no organic way of doing this.

Last night, we went to a dinner at our temple for the Jewish holiday of Sukkot. For dessert the kids sat around a large table and decorated cupcakes with blue and white icing and candy. Max has a hard time holding cupcakes because he grasps them so tightly they crumble, so I was feeding it to him. I watched some of the other kids watching him, trying to figure out what was up. His ever-present firefighter hat doesn't make him blend in with the crowd, that's for sure. 

When Max was done, I said, "Let's go say hi to the kids!"And we walked over to boys who seemed about his age and I said, "Tell them your name" and he said "Fireman Max!" I often have to prompt him about conversation so then I said, "Ask them their names!" and he did. Then we discussed ages. Then he asked them what they wanted to be when they grow up, which is always a good ice-breaker: An FBI agent! A police officer, who could work together with a fireman! An astronaut!

The kids dashed off and Max was getting tired and wanted to go home. We went and found Sabrina, who was playing Uno in the playroom with other kids. And then, something happened that nearly made me melt into the floor: Max put his hand into hers, which I've never seen him do. The two of them walked out holding hands.

She is there for him. And evidently, God wants me to know it, too. But this boy needs—no, he deserves—more. 

Wednesday, October 8, 2014

5 secrets of special needs parent happiness

This guest post is from Donna Thomson, author of the new book The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving. Donna is mom to Nicholas, who has cerebral palsy; they live in Ottawa, Canada. Donna began her career as an actor, director and teacher. In 1988, when Nicholas was born, Donna began a second career as a disability activist, author and consultant. Nick is 25 now and, Donna says, "He finds meaning and purpose by writing his hockey blog. He is active on Twitter and Facebook. His favorite activity is managing an online fantasy hockey pool."

Nick is looking to get a job, she continues, and recently created and delivered a resume to his local community ice-hockey arena; he's hoping to be hired for a part-time volunteer job. "This particular dream is still a work in progress, but he's determined to succeed," says Donna. She is married to James Wright, a retired career diplomat, and is also mom to Natalie.

I was alone with the doctor in the hospital playroom when she gave me the news about our six month-old baby son. "Never be normal" are the words I recall. I also remember “generalized cerebral atrophy." Pea brain, I wondered?  "Esophageal reflux," she continued, listing his challenges as her eyes welled up. "Nothing to keep food down where it belongs. Common in cerebral palsy. Pain similar to heart attack." I stared unblinkingly at the blue stripes on her blouse. I looked down and something red caught my eye. Blood was oozing from the edge of my thumbnail where I had bitten it.  

"Now I will be able to feed my child," I thought. Nick had never managed to suck or swallow efficiently, and his efforts to feed were punctuated with gasps and coughs. He spat up most of what he did manage to ingest. Suddenly, I was convinced that if I could learn to correct my feeding technique, all would be well.  "I will become an expert," I thought. "I will apply myself to becoming a great mother, and my baby will grow into someone perfectly perfect."

Passing the ward desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us. I scooped up Nicholas, deposited him into a stroller and paraded up and down the hospital halls, back straight, eyes fixed ahead.But I was not all right. I wrote in our baby book: "February 22-25, 1989: Nick admitted to hospital. Cat scan, PH probe and digestive barium x-rays. All abnormal…trying to absorb this terrible news."

Over the twenty-six years of our son Nicholas’s life, I have learned lessons about what it takes to thrive against all odds. These are five building blocks of happiness I’ve learned along our rocky path:

Accept the unacceptable. 

From the moment of Nicholas's diagnosis to the instant we realized that it was time for a wheelchair, we have been forced to accept the unacceptable. When it became apparent that Nicholas would never express himself verbally, a conversation with another Mom helped me reframe my thinking. "We don’t do our own dry cleaning or make our own soap," she said, "so what's the matter with a computer helping Nick to speak?" After that, assistive devices became our friends, not our enemies. Nick has taught me to trade my definition of success for his.

Embrace interdependence. 

Striving to be independent and self-reliant is a strong message in our society. And it's a toxic one: An inability to achieve independence is seen as a moral failure of personhood and if we believe that, we don't see our own frailty or that of everyone we love, especially our children. We are meant to be inter-dependent. Nick's network of support includes our family, his paid helpers, his friends and his doctors.  Together, we all help Nick to live a good life on his terms. We rely on each other as any winning team does.

Design your life intentionally. 

A wise friend told me recently that our most vital challenge in contemporary family life is to be intentional. Intentional about asking our children what a good day looks like for them, intentional about asking for what we need, even intentional about being happy instead of miserable. At Nick's neighborhood school, the other children were friendly, but brief in their conversations. One day, when I was volunteering in the classroom, I noticed an impulsive boy with a fiery temper was transformed into a caring, model student when paired with Nick. This young lad became a daily after-school visitor and frequent dinner guest. I learned how to engineer social opportunities for Nicholas by watching for signs that others needed something Nick and our family had to offer.

Know that a good life is possible. 

Everyone has different idea of what they need to be happy. In our family, we began by asking ourselves, "Given our realities, what is a life that we value and how can we create it?" For me, this meant learning to be mindful and grateful at home, but to begin planning for a retirement from giving full-time care to our son. Living in the moment gave me joy, but planning my own future gave me hope.

Stop time with special time. 

When Nicholas was young, he did a kind of non-directive communication therapy called "Special Time." During the hour, the therapist did not speak herself, except to reflect back to Nick what she saw him do and what it might mean. It was an hour of intense intimacy and heightened listening. Special Time had many communication benefits for Nicholas, but it had benefits for me, too. I learned the value of stopping time in order to listen intently and exclusively to those I love. Even ten minutes a day of special time with a son, daughter or spouse enriches family life.

Tuesday, October 7, 2014

How to give your kid with special needs superhero confidence

Being a superhero tops the list of children's career aspirations, per a new survey of 3910 parents of kids under 10. Thirty seven percent of kids would like to be a superhero when they grow up. Second on kids' wish list: They'd like to be a celebrity. Third: They'd like to be doctors. Fourth: President of the United States. Fifth: A teacher. Dead last: Santa, who only 10 percent of children aspire to be, according to the Coupon Codes Pro poll.

I already think Max is a superhero in so many ways. Throughout his life he has regularly wowed me with his ability to leap over obstacles in a single mental bound, his determination to power through challenges and his way of staying colossally cheerful throughout it all. Still, I am all for taking his confidence level to new heights.

"GREAT job!" I'll say whenever he writes out a word. "You wrote the 'F' and 'm' so clearly."

"Wow, you did a great job walking down the stairs slowly and staying balanced," I'll gush.

"Max, you said that word so well!" I'll tell him.

"NICE TRY!" I'll squeal whenever he's figuring out a new math equation. "You are such a smart guy. You'll get it."

I also dole out plenty of props to Sabrina, too; I want her to grow up thinking she's a superhero, too. I try not to get overly enthusiastic about Max when she's around. But Max is a kid who needs extra confidence to carry him through life; he will face obstacles Sabrina and his typically-developing peers will not.

I want him to feel confident about doing the best he can.

Sometimes, Max gets frustrated when he's not able to articulate words. Yes, he loves the speech app, but on occasion he is determined to articulate stuff and he refuses to type it out. He's at the stage where he thinks it's our problem if we don't understand what he's saying; he's been known to lean in closely to my ear and say whatever word or phrase it is more loudly because he's thinking I can't hear him. Even when Max grows out of this, I don't ever want him getting frustrated with himself for his speech or any other challenges, or see them as failings. It's why I praise his efforts as much as I praise his wins. It's why he gets props for coloring outside the lines.

I want him to feel confident about moving at his own pace.

On occasion, during my work commute, I will end up behind an elderly person who is taking their sweet time getting up or down stairs. I will catch myself internally rolling my eyes, in my rush to get to work or get home to the kids. And I will suddenly feel awful for my lack of patience—and acutely aware that this could very well be Max someday, meandering along amidst people in a rush to get wherever they are going. And I want to make sure he is perfectly OK with moving at his own pace as others move at theirs. It's why we leave extra time for activities or to get places, so we never have to rush him (although lately, it's Sabrina who's holding us up because she's in the bathroom gazing at her hair).

I want him to feel confident enough to ignore the stares.

Right now, I'm the one who notices if other people stare at Max when we walk down the street (and who at times gets worked up about it). When Max someday becomes aware of the looks, I want him to have the self confidence to believe that something is wrong with the people who blatantly stare, not with him. Bolstering his sense of competence will help him deflect the stare-glarers. And if he grows up to think that people are looking at him because he's so handsome, well, that would be rather awesome.

I want him to feel confident about his strengths and talents.

Max is a charmer, that's for sure. He has a high Emotional IQ—he's very perceptive about people's moods. When he can tell that something is weighing on my mind, he does this little wave at me that always makes me smile, and I thank him for cheering me up. He also has a great visual memory, and is the person in our family most likely to remember how to get somewhere. I call it GPM (Global Positioning Max). When he recently informed me I was going in the wrong direction on a highway and I quickly realized he was right, I laid it on thick: "Max, you have the best sense of direction! You are better than me and Daddy and Sabrina!" And he beamed and said, "That'll be twenty bucks." OK, he didn't actually say that but one of these days, he just might.

I want him to have the confidence to stand up for himself.

I've been the mama warrior since the minute we found out Max was having seizures in the NICU. He's not yet at the point where he can speak up for himself if, say, a program is excluding him. But there are baby steps I'm taking to helping become his own champion, including getting him to understand what his disability is and having him sit in on his IEP.

I want him to feel confident in a world that isn't always comfortable with differences. 

I have my own way of dancing, which basically involves moving my hands and shoulders a lot. Dave does a shuffle. Sabrina jumps around a lot. Max likes to do this surfing move. Chances are if someone were to watch all us on a dance floor, Max's moves might seem the most "different" because of his spasticity (I'm not calling him names, I'm referring to the way the cerebral palsy stiffens his muscles) even though each of us has our own unique style. Max is more likely to be attract attention throughout his life because of his physical and cognitive differences. And I want him to feel good about his dancing, his way of walking up and down stairs, his way of holding things and of speaking—his way of doing everything. If you're comfortable in your skin, you can handle the confidence busters that may come your way. If you feel like a superhero, then nobody can bring you down.

Monday, October 6, 2014

A gym refuses to host a birthday party for a boy with Down syndrome

A gym refused to host a birthday party for a boy with Down syndrome: That story made the web rounds at the end of last week. As mom Theresa Brown Kuhns of Cranford, NJ, tells it, when she headed to a local gymnastics school to sign a contract for a fifth birthday party for her son, Liam, she was turned down. The form states that "Surgent's Elite is not certified in special needs instruction and reserves the right to deny party and gymnastics instruction." As she noted on her Facebook page:

My son has Down syndrome. He has no restrictions medically. I tell the manager this who then says he needs to call the owner and asked me to step out. He came back and said because of insurance purposes and no instructors having special needs training, they cannot host this party.

Social media outrage ensued. The owner of the gym, DJ Surgent, called Theresa Kuhns to apologize and said the gym would take measures to be more inclusive. Kuhns said his apology was a "great first step" but also told the website Tap Into Westfield, "I don't think it's the big undertaking that he thinks it is." Indeed Surgent said, "We don't have anybody with special needs training and certifications."

So here's the thing. This is a story about understanding that kids with special needs, just like other kids, deserve to be included—exactly what many people reacted to. But it's also a story, a never-ending story, about figuring out ways to include kids with special needs of all kinds. While Liam may not have medical restrictions or require special accommodations, the truth is that there are plenty of kids with Down syndrome and other special needs who do need extra help. Kids with Down syndrome may have looser ligaments and musculoskeletal issues, as this article notes. Kids with autism may have sensory issues. Kids with cerebral palsy can have spasticity. Max was turned away from a Parents Night Out program at a hotel this summer mainly because he needed assistance with toileting, and the person running the program wasn't open to discussion.

The accommodations necessary to help level the field for a child with physical, cognitive or sensory extra needs should open a conversation, not close a door.

Places that run programs for kids have a moral and ethical obligation to understand a child's specific challenges without outright dismissing children because they have special needs. To the best of my knowledge, there is no formalized "certification" required for including children with special needs at a gym, let alone running a birthday party—it's mainly it's a matter of collaborating with the parents. I doubt insurance policies specifically state that kids with disabilities are a liability. In fact, when Max had parties at a kid gym as a tot, like every parent I signed a waiver absolving the gym of responsibility should injury occur.

These places also have a moral and ethical obligation to not make assumptions about kids with special needs—it's possible that no accommodations are necessary, thankyouverymuch. Every child with special needs is different: If you've met one child with autism, you've met one child with autism, the saying goes. Also: If you've met one child with Down syndrome, you've met one child with Down syndrome. And if you've met one child with cerebral palsy, you've met one child with cerebral palsy. 

Is what happened legally discriminatory? Per the Americans with Disabilities Act, businesses are required to provide "reasonable accommodations" to people with disabilities—but there is a lot of gray area. The law takes into account available resources and whether accommodations would place an "undue hardship" on the operation of a business. It's unclear who else was coming to Liam's birthday party but if there were one or more kids who required special accommodating, again: How about discussing this with the parent? 

Whatever the law demands, in reality a lot of this comes down to a flexible mindset. I reached out to gym owner DJ Surgent to share a guest post that inclusion expert Torrie Dunlap of Kids Included Together wrote for this blog after Max was refused entry into a program: 8 ways to include kids with special needs in programs, events, classes, camps, wherever. He wrote back the next day. The email read: "Thank you for the email and all the great information. We have been offering special needs in private and also classes with a shadow for years but we have not done it in a party yet. I will use your information to help us incorporate it into a party in the future. We have additional training to do but we are on our way."

This was heartening. As parents of kids with special needs, it's regularly and painfully clear to us that people do not understand children with special needs. It's upsetting when incidents like this happen—not just because our children are missing out but because of the moral tug-of-war involved. Why should we have to try so hard to get our children to be part of this world? But that's the way it is. And each one of us has to keep doing what we can: to advocate for our kids, to help people better understand who they are, and to keep pushing those doors open.

Theresa Kuhns got a call from the gym over the weekend saying they will host the party, reports Tap Into Westfield; the owner says he plans to hire someone with special needs experience to get his staff "up-to-date." Kuhns hasn't yet decided whether or not she'll go with it because she's been flooded with birthday party offers for Liam from other places.

Candles photo: Flicker/Jess_lynn 483; image of form:; photo of Liam, Facebook

Friday, October 3, 2014

The Special Needs Blogger Weekend Link-up: Yo

Welcome to my humble blog abode.

What to do if you're new here

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

Like this: What my child with cerebral palsy taught me

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

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

Happy linking!

Thursday, October 2, 2014

13 more train stops and only two are wheelchair accessible

Sometimes, I notice things I never would have before Max came along. Like on the train the other day, I glanced up at the electronic map.

There were 13 more stops till the end of the line, and only two were wheelchair accessible.

I wondered how people with mobility issues dealt with that and parents of kids in wheelchairs. I thought back to a mini documentary I'd seen a couple of years ago, The Long Wait. In it filmmaker Jason DaSilva, who has multiple sclerosis, details the challenges he had getting around New York. (It inspired him to create AXS Map, a crowd-sourced accessibility map.)

I stared at the electronic map again as the train rumbled on. I thought about how I probably wouldn't noticed the lack of accessibility if I didn't have Max, and that was troubling. I got off the train at a non-accessible stop, climbed a whole lot of stairs and wondered if Max could have handled them if he were there. I looked up information when I got home: Out of 468 subway stations in New York City, only 106 are wheelchair accessible.

As the parent of a child with disabilities, I care so much about getting the world to welcome, embrace and include him and others like him. It's a shock to my system to realize that I used to never think twice about such things. Who was that me I used to be? How could I have been so unaware? 

I carry some guilt about that.   

Thirteen more train stops and only two are wheelchair accessible. 


Related Posts Plugin for WordPress, Blogger...