Friday, November 28, 2014

The Special Needs Blogger Weekend Link-up: Black Friday Special! Free Posts!

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. 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: Love That Max: Holiday Gifts And Toys For Kids With Special Needs

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, November 27, 2014

Best Thanksgiving jokes for kids and grown-ups who are still silly

We programmed a bunch of these Thanksgiving jokes into Max's iPad so he'll have fun stuff to share with our family. Enjoy! Hope you and yours have a cozy, fun, stuffing-filled, low-drama, no-meltdown sort of day.

Knock knock.
Who's there?
Gladys who?
Gladys Thanksgiving, aren't you?

Knock knock.
Who's there?
Harry who?
Harry up—I'm hungry!

Knock knock.
Who's there?
Phillip who?
Phillip a big plate and dig in!

Knock knock.
Who's there?
Emma who?
Emma pig and I ate all the mashed potatoes.

Knock knock.
Who's there?
Esther who?
Esther any more gravy?

Knock knock.
Who's there?
Olive who?
Olive the stuffing too!

Knock knock.
Who's there?
Aaron who?
Aaron you having more stuffing?

Knock knock.
Who's there?
Arthur who?
Arthur any more sweet potatoes?

Knock knock.
Who's there?
Norma Lee.
Norma Lee who?
Normal Lee I don't eat this much!

Knock knock.
Who's there?
Tamara who?
Tamara we'll have leftovers!


Q: Why did the turkey cross the road?
A: The chicken took the day off.

Q: What sound does a turkey's phone make?
A: Wing! Wing!

Q: How can you send a turkey through the post office?
A: Bird Class Mail.

Q: Why did they let the turkey join the band?
A: Because he had the drumsticks.

Q: What always comes at the end of Thanksgiving?
A: The letter "g."

And for older kids...

What kind of music did the Pilgrims like?
Plymouth rock.

How do you make a turkey float?
2 scoops of ice-cream, root bear and a turkey.

Why did the police arrest the turkey?
They suspected fowl play.

If the Pilgrims were alive today, what would they be most famous for?
Their AGE.

And my favorite one of all (insert any animal for any occasion):

Knock knock!
Who's there?
Impatient turkey.
Impatient tur...

Wednesday, November 26, 2014

Handling relatives who don't get your kid with special needs: Group therapy

"As Thanksgiving approaches, I'm dreading this one relative who doesn't understand my child, who has autism. She has even been known to make comments like, 'Can't you control him?'" writes a reader. "Besides seething, what am I supposed to do?"

Coincidentally, I have that variety of relative too! The person I'm thinking of didn't see Max that often and didn't get him at all. He could not understand why Max would freak out at gatherings, and thought he was just being a brat.

Once, when I walked into a room and found this person chiding Max for getting agitated about something, I said, "I think the best thing is for him to be alone right now because he's overstimulated," and I whisked him away. I was upset but there was no point in getting into it right then and there because it's hard to have a good, rational conversation in the heat of the moment. (Although fantasizing about tossing my glass of wine at him was a bit calming.)

I finally called this person and told him I wanted to give him the Max lowdown, so he could better understand his needs. I explained that because of sensory issues crowds and noises would unnerve him, even if it was people he knew. Our talk helped. He's still not Max's BFF, but at least he no longer rolls his eyes at him or preaches to him about his behavior. 

What tactics have you used for handling relatives in these situations? Or just feel free to vent.

Tuesday, November 25, 2014

Holiday Gifts And Toys For Kids With Special Needs: 2014

This year's selection of gifts and toys for kids with special needs is based on recommendations from therapists. The toys, crafts and games encourage fine-motor and gross-motor skills, communication, coordination and brain power. But above all, they encourage F-U-N. And there's only one thing here that might annoy you!
Hog Wild Pig Popper ($9.05, Hog Wild)
This little piggie inspired kids to use both hands to squeeze her belly and pop foam balls out of her mouth.
Magformers Classic 30 Piece Set ($28.27, Magformers)
Made of powerful magnets, the shapes connect the second they're touched together to help develop fine-motor skills and coordination. Comes with 18 squares and 12 triangles.

Stomp Rocket Jr. Glow Kit ($11.59, Stomp Rocket)
Max's OT has been using this to get him to use both hands to load the rockets onto the launch pad. He's learning to stomp with one foot and balance. (Bonus: Aspiring firefighters can pretend the air hose attached to the launch pad is a fire hose.)
Rainbow Scratch Paper ($6.99, Lakeshore)
A classic that's always engaging. Kids can free-form color or practice letters and spelling. Includes 30 sheets of 7 x 9" paper and 6 scratching sticks. To help your child better grasp the sticks, wrap with modeling cray (like this Crayola kind) or build up a thick spot with a piece of self-adhesive ace bandage.
Bathtime Fun Hoops for the Tub ($11.22, Alex Toys) 
She shoots, she scores! Or at least she has fun trying to get the balls into the net hoop (suctioned to the tile wall), while working on throwing, aim and hand-eye coordination. The balls are also squirt toys.
Fun Fly Stick ($19.90, Unitech Toys, hand not included)
Be warned, if you try this you'll be reluctant to give it back to your child. (I may or may not have done that during the OT's last visit.) The wand works via battery-powered static electricity. You press a button (we tape it down so Max doesn't have to hold it) and aim the wand to levitate the silver mylar thingies and move them around. Includes 10 flying shapes. Here, you have to see it to get it:
Spot It! ($9, Blue Orange)
A fun card matching game in which players have to spot the one symbol in common between two or more matching cards, with a bunch of different types of games. Also consider the Playing Card Holder ($9.48, set of 2, CHH), a stand that holds cards.
Pop Toobs ($10.47, Poof Slinky)
These are highly recommended for kids with sensory needs, as well as kids who need help working on squeezing and pulling and generally getting their hands going. May also be used to bop annoying siblings on the head (not recommended, but it happens).
Piano Mat ($42.85, Smart Planet, cute child sold separately)
This gigantic plastic keyboard (30.5 x 2 x 70 inches) has play, record and demo modes, 8 instrument tones (including saxophone, guitar and xylophone) and 10 pre-recorded songs. Multiple kids and adults can use it at the same time. It gets kids moving, helps them learn to direct their feet and, oh yeah, makes music. Tip: Purchase a non-skid mat to place underneath for stability.
Melissa & Doug Deluxe Wooden 27-Piece Lacing Beads in a Box ($12.99, Melissa & Doug)
Kids can work at getting the lace through the blocks, sorting with colors, sequencing numbers and identifying shapes. The box has suggestions for developmental games.
Scribbler The Drawing Robot ($24.95, MAKTOO)
A super-cool project to do with older kids. You nelpthem put together recycled cardboard and simple electronics to create a mini robot that draws. Comes with cardboard, parts and markers. You supply the hot glue gun, glue sticks and one AA battery. Note, cannot train robot to clean the house. (Sorry.)
OgoSport Mezo OgoDisk Set ($32.11, Ogo Sport)
These 15-inch discs have a foam circumference and an interior trampoline-like texture for tossing objects back and forth. You can use the included koosh-type ball or any small object (but not your child's baby brother).
Firefighter figurines ($6.39, set of 12)
To encourage imagination (and firefighter aspirations). Max's OT suggested he could work on taking them in and out of a bucket set on the ground or table, then line them up (as you can do with any figurines your child might be obsessed with).
Plasma Car ($45, PlaSmart)
Built for kids ages 36 months to 8 years (or 220 pounds, which would be one extremely large child), this thing is pretty indestructible—we've had ours for years and Max still uses it. It's simple to put together, it's sturdy, it's fun. Kids can keep it moving via twisting the steering wheel but can use their feet to steer, too. It works best on a flat surface, especially wooden floors. And it's very low to the ground, so you'll have fewer worries about falls.
Oball Rainstick Rattle ($8.47, Oball)
It's called a rattle but kids with fine-motor-skill challenges of all ages can grasp and enjoy this six-inch ball. It has 30 finger holes, and a rainstick in the center that makes soothing noises.
Connectgons Original Building Set ($29.98, Hearthsong)
For kids with an emerging pincer grasp, this is an inspiring toy. It comes with 240 wooden circles, each with 8 slots; kids build structures by connecting the pieces.
Thunder Tube ($6.88, Remo)
Every year, I end up recommending one toy that will delight kids and make parents want to pull their hair out. This is that toy. It makes loud thunderous noises, rumbles and echoes with every shake. It also gives a nice upper body workout as kids move their arms from shoulders to wrists. No batteries required, just parent tolerance.
Holy Stone Colorful Bowling Set ($19.43 for 10 pins and 2 black balls, Holy Stone)
You will not strike out with this gift (he, he). Set up the pins on any flat surface and challenge kids to knock them down.
Kinetic Sand ($14.85, two-pound bag, hand not included; Kinetic Sand)
Unlike its sandbox cousin, this stuff won't scatter everywhere. It's basically like playing with wet sand; kids can make any shape and it will retain its form. It's ideal for kids who crave sensory input or need to overcome sensitivity. To make it easier for kids to manipulate, enclose it in some sort of plastic shoe-box size bucket (there's also a cute orange sand tray you can buy). Fun activity: bury treasures like coins, buttons, shells or other objects and have your child find them. Also available in two-pound bags of pink, green and blue.
Gyro Wheel ($12.49, Tedco)
We've had versions of these over the years; Max has been enjoying this version during therapy sessions. He has to use precise moments to get the light-up wheel rolling around, and we've found it to be a soothing bedtime activity because he really has to focus on it.
Sno-Brick Maker ($6.99, Ideal)
Take the occupational therapy outdoors! Kids scoop snow into the hollow inside, pat it down, flip it over and shake out a block of snow for building fun. Required: snow!

My PlayHome ($3.99, iPhone and iPad)
One speech therapist calls this her favorite app for eliciting language and teaching kids about sequencing and following direction. Kids can roam around a virtual house with different rooms, interact with people and do various things including eat pizza, brush teeth, change clothes and water plants. The therapist likes to ask kids to talk about what the person is doing or about to do.
Tozzle ($1.00, iPhone, iPad and iPod touch)
There are lots of puzzle apps out there, but the consensus is this is one is the best. It has different levels of difficulty, and encourages kids to get those fingers moving.
World Landmarks Explorer ($2.99, iPhone and iPad)
Kids can explore 112 landmarks in 53 countries via photos, videos and interactive maps. They will still, however, beg you to take them to Disney World in person.

And let me not forget...

Lots and Lots of Fire Trucks DVD Vol. 1 ($9.95)

And if you'd like to check out previous gift guides...

Great toys for kids with special needs 2015
Great toys for kids with special needs 2013
Great toys for kids with special needs 2012
Great toys for kids with special needs 2011
Great toys for kids with special needs 2010

Monday, November 24, 2014

How parents can talk to kids about ones with special needs

First: two stories

One story, I read about on Facebook. It was posted by a mom of a child with cerebral palsy.

So I'm having a sad moment. Daniel and I were at Target walking around. Daniel spies a little girl and smiles at her. The girl looks Daniel up and down with a look of disgust and says loudly 'Ew, gross' and walks away, but continues to look around the displays at him. He looked so sad. I pushed him away and said some people are just mean inside and out Daniel and you can't let it bother you. All said thru tears running down my cheeks....  That was the first time I've ever experienced something like that and it was crushing for me I can't imagine how he felt.

The other story is mine. Recently, my son came to a Girl Scouts meeting with me and my daughter one evening because our sitter couldn't stay late to watch him. A couple of girls kept staring. "Is he speaking gibberish?" I overheard one say. "He talks like Max, and he's learning," his sister said. I was proud of Sabrina. But I could not thinking about the way the girls had looked at him.

What I'm about to say

I am not here to preach. I am here to plea.

Why I'm saying it

As the parent of a child with a disability, I know that children often stare or gape at kids who have special needs. Sometimes, they make comments. They are kids: They're curious. They often don't know any better. It's possible they have never met a child with special needs. Or their parents have never spoken with them about kids with special needs.

If I'd never had a kid with special needs, I probably wouldn't have thought to talk to mine about kids with disabilities. But I did have a child with special needs. And like many parents of kids with disabilities, I am painfully aware of the fact that other kids are sometimes wary of my child, sometimes afraid of him and sometimes disgusted by him. I am glad to help explain my child and encourage connections, but it would be great if it came from you. It's not that hard.

It's ideal when conversations like this can happen organically—say, because your child has met a kid with special needs or seen one at the park or somewhere else. Otherwise, you can bring it up on your own.

Talk to your kids about ones with special needs

Tell them that there are lots of types of people in this world. Everyone is unique. Some kids have differences that are more obvious.

Some kids have trouble with hearing or cannot hear.

Some kids have trouble with seeing, or cannot see. 

Some kids talk in their own special way. Some kids cannot speak words, but they have other ways of communicating; they may use their hands or their eyes. Or they have an iPad or machine that speaks words for them.

Some kids walk in their own unique way. Some kids need braces on their feet to help them get around. Some kids use wheelchairs or walkers.

Some kids act certain ways because it makes them feel comfortable, like they like to repeat words, flap their arms or bang their knees against a table.

Explain different kinds of special needs

Obviously, there's much to be said here, but these are starting points. It's good to note that there are different kinds of cerebral palsy, Down syndrome and autism. 

Cerebral palsy happens when a child's brain gets hurt when he is born. Because the brain sends signals to muscles, he may have trouble with movements like walking, using his hands and feet and talking (fun fact: the tongue alone has eight muscles). You could ask your child to pick up something with his non-dominant hand to show how kids with CP may have challenges using muscles.

Kids with Down syndrome were born with it—they got a little extra information in their blood that can change some things, including how their eyes look. Sometimes it takes them longer to do stuff, including walking, talking and taking care of themselves. You could ask a child to talk with her mouth full of food to understand how talking with special needs can be a challenge.

Autism is a brain difference that makes it hard for kids to handle the world around them. They may be scared of loud noises or dark places. They may have trouble adjusting to changes, like trying new foods or having stuff in their room moved around. They may flap their arms up and down when they are excited or nervous. They are sometimes not sure what emotions look like—they may not be able to tell someone is happy or sad. And they may be sensitive to how things feel. You can ask your child if a shirt tag has ever felt scratchy, then note that kids with autism may find tags super-scratchy and uncomfortable.

Talk about what's more alike than different

A child with special needs is still a child. Just like any kid, they can enjoy playing with toys, coloring pictures, watching videos, going to the park and having birthday parties. They have favorite colors, TV shows and songs. They go to school and learn. They have unique talents and gifts, even if a child does not talk like they do or move like they do. They can laugh and get upset and get mad.

They love their moms and dads, like any kid.

Their parents love them, like any kid.

There is no reason to feel sad for them.

Ask your child to treat a child with special needs just like he'd want to be treated.

If they ask how to talk to a kid with special needs, tell them this: "Start with saying 'Hi.'"

You could always use a book or two to kick off a discussion about kids with special needs. A few good ones: It's OK To Be Different by Todd Parr (for toddlers); Don't Call Me Special (about physical disabilities, for kids ages 4 and up); My Friend Isabelle (about a girl with Down syndrome, for kids ages 4 and up); Susan Laughs (which shows how kids in wheelchairs are like any other kid, for kids ages 4 to 7); Let's Hear It For Amigal (about a girl who gets cochlear implants, for kids ages 5 to 7); See The Ocean (about a girl who is blind and sees beauty with her mind and heart, ages 5 to 7); My Brother Charlie (a book that explains autism by actress Holly Robinson Peete, based on her son with autism; for kids ages 7 to 10).

Here. I Put Together These Slideshows.

I collected photos from parents of kids with special needs. Parents can use these slideshows as talking points.

Kids With Cerebral Palsy Are Kids, Too

Kids With Down Syndrome Are Kids, Too


Kids With Autism Are Kids, Too


Please, speak with your children

If you don't have a kid with special needs, you might think that my greatest challenge is handling my son's disability. Yes, he needs extra attention and care. But actually, one of my biggest challenges in life is getting other kids to interact with Max, and see him for who he is: a kid.

Parents have all sorts of discussions with kids about diversity: They talk about different races, different cultures, different lifestyles and different body types. I hope you'll also have discussions about kids with different needs, and encourage your kids to ask questions.

You'll teach your kids to be more open-minded and accepting. They'll learn to appreciate differences, rather than fear them. You'll be instilling understanding and kindness in them, always a good thing.

And you'll be doing kids like mine a whole lot of good.

Photos of children with Down syndrome from project with Noah's Dad

Friday, November 21, 2014

The Special Needs Blogger Weekend Link-up: Your virtual hangout

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. 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: Love That Max: On Being A Little Freaked That Your Kid's Getting Older

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, November 20, 2014

The just-deal-with-it school of life

Friday afternoon, I had laparoscopic surgery to blast some pesky fibroids. Six, to be exact. One the size of a small grapefruit. Friday night, I went home from the hospital. Saturday and Sunday, I hung out at home and watched a lot of HGTV but I also forced myself to walk around as much as possible. Monday, I did some errands. Tuesday, I went back to work. Today: I'm OK! Mostly.

"I'm a little tired," I told my friend Jeannie at the office.

"Your body is recovering," she pointed out, matter-of-factly. Oh, yeah.

It's not that I don't have time to recuperate (although between work, the kids, yada yada I kind of don't). It's that I was determined to power through, because that's the way I was brought up. Forget just do it—I'm all about just deal with it. It's one of the traits that's most come in handy for raising Max.

My parents were both loving and nurturing, but also super-pragmatic and big believers in self-reliance. If I groused about swallowing the gigantic multivitamin pill, they'd remind me to drink it with water. If I was concerned about a school assignment, they'd point me to the encyclopedias in our den and encourage me to find the answers myself. Yes, I could take jazz dance but they weren't going to shell out sixty bucks for the recital costume, and did I want to use my allowance? No, we couldn't buy covers for our textbooks, we could make them out of brown paper bags!

There was no great adversity I had to overcome in my childhood, other than my father's temper, but my parents instilled a whole lot of practicality and common sense into me.  They made me believe that I could do anything I wanted to, if I applied myself to it.

My just-deal-with-it mentality kicked in as soon as Max landed in the NICU. I wallowed, to be sure. But in between sobfests, I started looking into treatments and researching doctors. I called Early Intervention before Max was even home. Things had gone out of control with his birth—nightmare level—but I was determined to do whatever I could within my power to help. Practically, I knew I had to. If not me or Dave, then who?

Deal-with-it me kept pestering the social worker at the developmental pediatrician's office to get me an appointment with him, even though he had a months-long wait list. (She did).

Deal-with-it-me figured out ways to influence the insurance company to pay for Max's speech therapy (have neurologist and speech therapist write dire letters about his need for oral-motor therapy to prevent choking). 

Deal-with-it-me persuaded Max's old school to have him evaluated for a communication device, even though they didn't think he was ready.

Deal-with-it-me got him switched to a more progressive school.

Deal-with-it-me got Max a stem cell infusion at Duke University.

Deal-with-it-me jumped on the iPad and speech app his therapist wanted him to try.

And so on.

I've tried to instill the same practicality and just-deal-with-it attitude in my kids. At times it's hard not to coddle Max, who struggles to do things independently. At night, we argue over brushing his teeth. He wants me to do it for him. He'll point to his eyes and tell me he's tired. I'll respond that we are not leaving the bathroom until he cleans his own teeth. I always win.

Oh, yes, I have determination; I like to think Max inherited his kick-buttness from me. But the undercurrent of it all is this belief that I can and will get through it, be it Max's needs or my surgery. And for that, I have my parents to thank.  

Image: Flickr/santoposmoderno

Wednesday, November 19, 2014

It's Special Needs Parents Electronic Device Appreciation Day!

OK, I made it up. There's no official day devoted to the appreciation of electronic devices. Banks will not be closed. School is happening (as you likely already gleaned). Nobody on TV is going to make speeches. Your postal worker will deliver your mail.

But the truth is, electronic devices deserve special recognition, because they have been game-changers for families of kids with special needs. I am not talking about stuff like, oh, speech apps that enable our children to communicate. I am talking about the electronic diversions that give parents a break and some peace of mindForget the kids—we need these devices! 

This was our life before the iPad came along:

We couldn't go to most restaurants, since Max was scared of noises, new places and crowds. Headphones sometimes helped, but not if he was just plain terrified of walking into somewhere different.

He'd melt down in airports and on planes.

He'd lose it at family events.

He barely wanted to go to kid activities.

He didn't so much enjoy leaving the house.

This was our life after the iPad came along (cue the angels singing):

Wherever we went, Max could sit and enjoy a movie or videos, with headphones on if he chose. Once he warmed up, he'd usually try eating at the restaurant/doing the activity/mingling.

And you know what? As he realized that the world out there wasn't so scary, he grew more comfortable doing stuff without his electronic security banket. He didn't get codependent on his iPad—he got confidence.

YES OF COURSE: Our kids are not Krazy-Glued to their electronic devices. We go for walks, we go to the mall, we take them to the park, to the playground, to the fire station. YES OF COURSE: Screen time for hours on end isn't good. The American Academy of Pediatrics recommends that entertainment media be limited to one to two hours a day for children and teens, and should ideally be "quality programming." (It also recommends that TV and other media be avoided for tots under two, which I definitely screwed up.) (When the kids are on school breaks, I also screw up the "one to two hours a day" thing.)

I am not sure whether the Tacodile scene in Cloudy With A Chance of Meatballs 2, watched ad nauseam, or YouTube videos of fire trucks zooming to fires constitute "quality programming." Hmmm.

But here's the thing: Electronic devices serve a critical purpose for parents of kids with special needs. They distract and engage our kids when they're on sensory overload and generally impossible to manage. (And if this sounds implausible to you, you do not have a child with sensory issues.) Electronic devices enable our families to do activities as families. They spare strangers from having to listen to our kids' screeches. They make our lives work. While we hope that over time our children's sensory issues and fears will dwindle, for now, we need all the resources we can get. And sometimes, we need iHelp.

And so....







There is no shame. There is only salvation.

Thanksgiving is coming. At homes around the country, parents of kids with special needs will be calming their children—nervous about the crowd of relatives, the hustle and bustle and the disruption in their routine—with electronic devices. And for that, I'd say, a whole lot of us will be giving thanks.

Tuesday, November 18, 2014

On being a little freaked that your kid's getting older

"Max, you look so much older with your haircut!" I told Max last night.

"No!" he told me. "I'm new!"

We both cracked up.

Unlike Sabrina, who has been gazing into the mirror wondrously at her hair for years now, Max has never cared how his hair has looked. Me, I like it on the moppy/floppy side with long bangs, aka the too-cute cut. I've let his hair get so long that on occasion his teacher has sent not-so-subtle notes like "Max is due for a haircut!"

But this year, Max started caring about his hair—he likes his bangs tucked into his firefighter hat. First, we found him in the bathroom one afternoon, slicking back his hair with water. That was the first time I've ever seen him doing anything with his hair, and it was cool. Then, he started asking Dave to gel his hair for him. Then he asked for a haircut, just when his hair was at its moppiest/floppiest/cutest, and of course I obliged even though I didn't want to.

For him, it's all about the hair but for me, it's more than that. At heart, I'm not ready for him to look like a tween.

I'm sure many mothers struggle with the reality of their rapidly growing kids. What happened to that baby I used to rock to sleep? How did life pass so fast? Will he still give me those uninhibited hugs and kisses? Does this mean I'm getting old, too? (Yep.)

I have an added concern. Max has always looked younger than his age, and that's worked well for him—it's gone hand in hand with his development, since he acts younger than his age. But I wonder about this evolving child in his Fire Chief plastic hat who is going to be 12. It's not that I am concerned about whether he will catch up with his peers, because I long ago stopped caring about that. Max is on his own timeline; I'm here to guide the ride, but I can't make it go any faster.

It's just this: He already gets stares from other kids. As he starts looking more like his age, I think there will be even more stares. And kids may be even more likely to keep their distance. And the older ones who talk with him now because they think he's cute, where will they be?

I fear the day when he notices the looks or the peers who ignore him. I hope he will not care, although that's a double-edged sword. Because if he doesn't care, it means he lacks that awareness. And if he does care, he has that cognition—but he may also feel the pain.

If and when Max does sense that kids are looking at him or shunning him, well, then, I hope I can empower him to engage with them and break the stares. Or say stuff like, "Hi, I notice you're staring, what's up?" Or, "Hey, babe, want to try on my fire hat?"

Most of all, I hope he will continue to feel nothing but joy in being who he is, like he does now. And that maybe he will be game to let his hair grow out just a little moppy-floppy.

Monday, November 17, 2014

A girl caged at school: A disturbing reminder that we are our kids' protectors

There's comfort in knowing you have a team of people helping you raise your child: doctors, therapists, teachers and other experts. But really, it comes to this: You are your child's best advocate—and protector. I was thinking about this over the weekend after a reader let me know about some horrifying news out of Fresno, California: a 7-year-old girl with special needs suffered abuse at school in plain sight.

When parent Ledelldra Brooks visited her daughter's classroom at Viking Elementary in May, unannounced, she found her daughter in a makeshift cage assembled from a toddler gate and crib attached to two bookshelves. As reported by The Fresno Bee, Brooks pulled her daughter out of the class, called the principal and alerted the police. Investigators came and took apart the enclosure.

Eventually, Brooks hired an attorney and submitted claims to the school district. Last week, Fresno Unified's Board rejected the mother's claims. Brooks' attorney, Peter Alfert, intends to file a lawsuit

Internal district emails show the school quickly got the 7-year-old, who has intellectual disability and a seizure disorder, into a new school. The teacher was placed on administrative leave...but now works at another elementary school.

The police report includes interviews with two aides who says that children were put in the gated area only when they were out of control, or posed a risk to themselves. On the day in question, Brooks' daughter had supposedly been disruptive and scratched an aide, why she was caged. Principal Christine Yang told authorities that the enclosure, three years old, was a safety precaution, and she'd seen children inside it before.

Yes: The principal wasn't just aware, she didn't seemingly have an issue with this setup.

Caging children—even to help them calm down—can do psychological harm. "It's a cage, this is what you would put a wild animal in," said Joe Bowling, executive director for the regional board of the California State Council on Developmental Disabilities. "Obviously there are people in the district that need training. I can't believe that somebody, an administrator walking in that room and seeing it, would allow that."

We've been lucky to have had good teachers and class aides in Max's life. We had an issue with one bus aide several years ago—a sweet woman who, we found out, was seating Max in an unsafe and uncomfortable way. I raised heck about it. Then I demanded to know what training protocols the bus company had, and how they ensured drivers and aides followed them. The head of the bus company took issue with my questions. I didn't care; the fact that the aide didn't know what she was doing—and that nobody at the bus company was aware of that—raised alarm bells. Eventually, Max's bus got a new aide.

Of course, there are always two sides to every story. Here's another perspective from a Facebook reader who left a comment noting that her child, who is in a wheelchair, is in a class with a new student who has autism and ADHD. That student can get out of control, and has sent one teacher to the hospital after biting her; another teacher ended up on crutches. A one-to-one aide isn't an option because of budget reasons. As she writes, "I hold no animosity towards this kid at all. He is how he is. He needs help and so does the teacher. They have a corner of the room that they set up as a safety corner for him that had a gate. They could put him in there where he could play safely without harming anyone and my son could get out of his wheelchair and his floor chair. The administration said they couldn't do it and they don't have the gate anymore."

This, too, is troubling. The decision not to gate the child seems right—yet wrong, because the school has not offered up another solution and it's endangering both students and teachers. It seems like this mother will now have to advocate for her child's right to be in a safe environment where he is free to move around.

All children, special needs or not, need their parents' eyes and ears and, as is necessary, our big mouths. But our children with special needs require extra monitoring and advocacy, especially when they are unable to speak up or for themselves or defend themselves. What happened in Fresno is a sobering reminder that it's up to us parents to keep an eye on the the people keeping an eye on our children. As my friend Erica said on Facebook, "I'll never stop being that mom that is aware of and involved in my child's academic and therapeutic environments. Annoying? I'm OK with that label."

Friday, November 14, 2014

The Special Needs Blogger Weekend Link-up: Go to it!

Welcome back! I hope you had a good week. With lots of chocolate.

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. 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: Love That Max: A Cool Way To Describe Kids With Special Needs

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, November 13, 2014

Do they fight? Of course—they're human

"Max! You smell DIS-GUSTING!" Sabrina shouts. That's how I woke up the other day.

I rolled out of bed.

"What's wrong?" I asked.

"He smells DIS-GUSTING!" Sabrina said.

"Sometimes people don't have great-smelling breath in the morning, and Max's medication can effect it," I said.

But there's no reasoning with a 9-year-old hell bent on bugging her brother.

"He's gross. Max, you're DIS-GUSTING!" she told him.

Max wasn't fazed but, for good measure, he gave her a little push. More of a nudge, really.

"HE HIT ME!!! HE HIT ME!!!" she screamed and shoved him good.

Max roared a terrible roar.

Just another round of fighting at our house.

One of the most common questions I get about the kids is: Do they fight? And my answer always is, "Sure they fight! They're siblings."

They fight over toys. They fight over who gets to take a bath first. They fight over which TV shows to watch. Sometimes, Max tries to bamboozle Sabrina into getting things for him and then she'll tell him off because she knows he can do it (which makes me want to cheer). Sometimes, Sabrina likes to tease him, "Maaaa-aaaax, you're not having a birthday party!" and he gets royally ticked although I'm pretty sure this behavior lies in her genetic makeup because that's how I used to tease my sister. Sometimes, I'm driving along and suddenly they're both screeching in the back seat over who knows what and I wonder why cars aren't equipped with devices that drown out the distracting sounds of fighting kids.

I'm sure people ask whether Max fights with Sabrina because kids with special needs can seem so different than other kids. But like any children, they can be territorial, moody, pesky and have a burning desire to piss off their siblings. Like any children, their siblings may find them annoying; they're not cutting them any breaks because they're disabled. Perhaps Sabrina, like other siblings of kids with special needs, has some pent-up resentment because Max does get a fair amount of attention, as much as Dave and I try to balance it out.

When my sister and I were little, we fought a lot. I can still remember the pained look on my mom's face as she implored us, "Girls, stop fighting." It hurt her to see us going at it. I don't have that reaction with my kids. I mean, it's not like I enjoy it when they do battle. But I like that Max is learning to defend himself. I like that Sabrina treats him like any kid. And, hey, there's nothing wrong with being typical.

Wednesday, November 12, 2014

Dear stores: Please educate your employees about people with disability

The news has been spreading: A Bath & Body Works store refused to allow in a group of students with special needs. It happened at the Chesterfield Mall in Missouri, reports the St. Louis Post-Dispatch. As troubling as this incident is, it points to a bigger problem.

What went down: Seventeen students from Fort Zumwalt North High School in O'Fallon took a trip to the mall last Thursday to practice life skills, and were divvied up in into small groups, accompanied by staff. As teacher Alice Maloney noted in her Facebook post on the incident, the students were supposed to find stores, locate a product and write down information on it.

When her group tried to walk into Bath & Body Works, a staffer stopped them and said they could not come in. Apparently, the employee thought the group wouldn't buy anything—and that by entering the store and passing by the sensor that tracks foot traffic, it might hurt their sales percentage.

Maloney explained to her students that they were not welcome, although they did not understand why. She noted that other groups from the school "were met with the same rudeness."

Her final words were particularly disheartening: "This field trip turned out to be more than a life skills and social skills lesson, they were exposed to discrimination!" 

Bath & Body Works soon issued the requisite apology: "Providing our customers with the exceptional shopping experience is of utmost importance.... We very much regret this misunderstanding and have personally spoken with the teacher to offer our most sincere apology and welcome her and her students in our stores at any time."

This incident resulted from one staffer's bad attitude. But there's a good chance the Bath & Body Works powers-that-be haven't made it clear to employees that customers with special needs are to be treated like any customers. Would a Bath & Body Works store deny a group of so-called typical teens entry because they looked as if they'd just sniff away and not shop? I doubt it.

While Bath & Body Works is getting the bad press for this, I'd venture to guess that the majority of stores don't give employees training about differently-abled individuals. (And if you have insight into this topic, by all means prove me wrong.) It wouldn't take much, and it might just head off a public-relations nightmare. True, training can't resolve employee ignorance or prejudice toward people with disabilities, but companies can make it very clear that intolerance is unacceptable, and equal access is mandated by law.

"Training" employees about people with disability sounds more major than it is. Really, it's common sense. If parents like me were to talk with a gathering of Bath and Body Works employees (how cool would that be?), we'd tell them that young people with disabilities would like to be treated with the same respect and congeniality as other customers. Keep it real–speak to them in a normal voice. Realize that yes, they can make purchases, even if they may not communicate or act like other people do. (And even if they need help buying stuff, they can still have totally normal materialistic urges. Exhibit A, located in our home: A bazillion pieces of Lightning McQueen merchandise.) If someone with special needs is flailing his arms or making noises, that is his way of expressing himself—he is not being purposefully disruptive. Know that some kids use their strollers as wheelchairs and so even if strollers aren't allowed in a store, if a parent says it's because a child is disabled, then that stroller should be allowed in the store. All this goes for restaurants, too. 

Stories like this are unnerving. I felt awful for those students. That's the thing about social media: Hearing about these incidents makes you acutely aware of yet more permutations of discrimination. They make you fear for your own child's future. And yet, you hope that good will emerge because people are making it clear that treating people with disability like second-class citizens won't be tolerated. Stores, take note.

Image: Flickr/Mike Mozart

Tuesday, November 11, 2014

A cool way to describe kids with special needs

Friday night, we had dinner at the home of a friend of Sabrina's. The family knows Max, but not so well, and they have not yet experienced his firefighter stage.

"Does he wear the hat all the time?" the mom asked.

"Yep, except to school, in his bath and in bed," I said.

At some point, Max excused himself from dinner and sat down in the living room to play with a toy truck. Minutes later, he started enthusiastically saying a word to me that none of us could understand.

I ran over with my iPhone so he could type it out.

"Cake," he spelled.

Ah. I'd brought a chocolate layer cake for dessert, and he wanted some stat.

"He's quite the character!" the dad said, and it was like a stream of light beamed down from the heavens upon me.

"Yes! He's a character," I agreed, wholeheartedly.

It was one of my all-time favorite ways someone has ever described Max.

I am not a big fan of the term "special needs," but I lean on it for lack of a better one. "Disabled" works as it needs to but emphasizes the negative. "Differently-abled" is good, if a bit of a mouthful, and I keep meaning to use it more often.

But "character"? I'll take it! Max is a character, with his quirks and obsessions and his unique way of expressing himself, walking and using his hands. Not everyone always sees it that way, though. Some just see a very different kid, one who has disabilities.

The Oxford dictionary defines "a character" as "an interesting or amusing individual." Webster's says "a person marked by notable or conspicuous traits." And that's Max, for sure. There's no ignoring his personality, especially when he walks around with that red Fire Chief hat on. People find his ebullience for things big (trips) and small (cake) catchy. He's got a million different kinds of laughs, and each one makes you want to laugh right along with him. His new favorite: What Dave describes as his "evil laugh," which sounds like "He. He. He." And he uses it to good effect, like when he's turned off HGTV even though I was watching it because HGTV does not feature fire trucks.

I loved that this man considered Max's way of communicating not a deficit but, rather, a sign of a character. He paid him a compliment. When I told him about Max's speech app, he said "I'd love to see it," and he meant it, yet more proof of his great perspective.

Obviously, I will not be able to write "He's a character" in the "diagnosis" part of Max's insurance forms. But I think it's a nice description for Max to have in his repertoire. He knows he has cerebral palsy. He IDs as being a "nice smart guy," words he used to describe himself for a recent school assignment. He can be a character, too, if he so desires. Not that I'm suggesting this for adults with disabilities—but I like it for kids.

This word could definitely come in handy when people play the "Guess the diagnosis" game. Strangers typically ask, "Does he have autism?" Next time I can say, "No, he's a character."

Monday, November 10, 2014

When pride for your kids beams right out of you

Max is pretty good at destroying pumpkins. This we discovered when our town held a pumpkin-smashing charity fundraiser in a park and Max jumped right in when we arrived, like he did it for a living or something. It was an admirable feat of strength, focus and kick-butt-ness.

Sabrina did a fantastic job as well, so I guess it runs in their genes. As I watched the kids, I felt a burst of pride. My big, beautiful, strong, determined kids, happily clobbering pumpkins into smithereens. Yeah.

I am sure I had that same gloppy look on my face that my mom used to get when she watched me and my sister doing stuff. It's called "kvelling" in Yiddish, to feel extraordinarily proud.

"MOM! STOP!" we'd protest.

But now, as a parent, I know: Few things in this world are as purely blissful as those surges of pride you feel for your kids. 

Sabrina loves it when I swoon over her. Actually, she solicits it. "Mommy! Watch me do a cartwheel with a round off!/Mommy, aren't you excited I got all the answers right on the test?/Mommy! I made an iPhone case out of rubber bands! HOW COOL IS IT!!!/Mommy, don't I look adorbs with this choker?"

Max, however, gets downright testy when I notice his accomplishments, give him props or attempt to snap pictures. Right after I got the below photo—of him doing an admirable job holding a cup, controlling the flow of liquid and drinking by himself—he let out a roar.

So I keep my gushing low-key with Max. I did want to let out a shriek earlier in the week when he came home from school with this:

He had typed it up all by himself, at school. It's about his joy trip to Chicago with Dave in March and what they'll be doing (with a mention of the Disney Cruise we're going on in December, and capped off with a line I had to add about a firefighter friend he adores). It started out as a fantasy, after Max saw some cool Chicago fire stations on YouTube, but then Dave decided it would be fun to do a boys' trip there, so they're going. It's in honor of Dave's birthday, Max says. Right. 

Even more happy-making than kvelling to yourself: Synchronized kvelling with your significant other. As Dave and I occasionally do when we watch Max ride a bike, participate in an activity or achieve an inchstone. When Max's music therapist posted some videos this week, Dave and I watched them standing in front of my computer late at night, with sappy-happy looks on our faces. We know just what Max has been through in his life, and we know what a feat the singing is. And he is trying so, so hard to articulate words, and he gets better as the song goes along. And, OMG, the cuteness.

Wishing you lots of pride, swoons and kvelling this week.

And just a little more because...pride.

Friday, November 7, 2014

The Special Needs Blogger Weekend Link-up: The calm before the holiday storm

It's that time of year when the kids are in the school groove (more or less), it's deliciously crisp but not cold outside, and you're just starting to think about Thanksgiving food—and not yet freaking out about getting all the holiday shopping done. You have plenty of time to post. Do it!

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: Why It's Good I Didn't Know Then What I Know Now

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!

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