Thursday, December 14, 2017

Rap this, Eminem: It's by the mom of someone you dissed

Hey Eminem I finally heard Walk on Water, your new song
Hear me out, now don't get me wrong
When you rapped
God's given me all this
Still I feel no different regardless
Kids look to me like a god, this is retarded
I couldn't believe you
Really, that's the best you could do?
I think you're a genius even if you ain't no Jesus
But you dissed my boy Max and people like him
He's got a disability yet he's still a basic human being

That r-word demeans an entire population
It makes people think those like my son
Are jokes, losers, stupid, pathetic, no-ones
Years ago mental retardation was a medical description
Then it got out of control, it became demeaning
Now the term is outdated
It should be cremated
Here, try your name in its place:
I'm such an Eminem, I let people down
See, it's a slam even if it's not said to someone's face

My son deserves respect
That's not too much to ask for, except
Lots of people think it's funny or cool to keep using that word
I see it all over social media hashtag #ithurts
If you think being a rap star is hard
Try being a person who gets the label of 'tard

What's that, you say, it's just a word
Get a grip, don't flip, only sticks and stones break bones 
Yeah, well, don't give me that
My son has enough stereotypes to overcome in this world
People often only see his disability
None of the ability
And when that word keeps getting passed around
You all keep kicking him down and down

This isn't about freedom of speech
Or trying to preach
It's a slur, that's the truth, I'm no liar

Sorry, I'm not available for hire
You're a master of words
So it's pretty absurd
That's the only one you could use
Here let me help you out:
God's given me all this
Still I feel no different regardless
Kids look to me like a god, this sh*t is hard

If you had a child with intellectual disability
Maybe you'd have more civility
You wouldn't want people slamming him
For me, that's exactly what's happening
I'm raising an amazing boy who deserves better than this
Someday he'll stand up for himself
But for now, I'm gonna get all Mama Bear
So here I am, asking you to care

Wednesday, December 13, 2017

The mayor of the doctor's office

Max headed to the pediatrician's last night for his annual checkup. He's perfectly fine with going there. I, of course, remember the meltdowns he used to have in the waiting room when he was younger. I'm thrilled that visits are now a non-event, but I'm haunted by the screeches of ghosts past.

Dave took him, and came home with a glowing report from the doctor about how much Max has grown, along with the observation that Max was the mayor of the doctor's office. I'd seen it the other week, when I brought him in for a quick check on something. First, Max stood at the reception desk and chatted with the receptionist.

"How are you?" he asked. "What are you doing?"

When the nurse took us back to an exam room, Max wandered out as we waited for the doctor and headed to the nurses station. He leaned over the giant desk, rested on his arms, grinned at the ladies and just hung out there, like he was some suave dude who'd sauntered up to a bar and was trying to hit on babes. Who knows? He is fifteen. Hmmm, that might be a first: a pediatric patient trying to pick up the nurses.

Another possible first at the pediatrician's: the patient who only wanted to talk about his trip to Las Vegas.

"I've never been there," said one nurse.

"Me, either!" announced Max. "It's my first time!"

"Are you going to gamble?" another asked.

"No!" said Max. "I'm eating at Benihana's!"

Then Max wanted to make sure he wasn't getting any shots. Nope!

I love watching this side of Max. He's generally pretty social but when he feels comfortable somewhere, his confidence soars. He used to behave the same way at his old school; after he got off the bus in the morning, he'd saunter around, say hello to everyone and give them high-fives.

By this point, the doctor was waiting for Max in the room. He told her all about Las Vegas as well. (He'll be writing about it here, soon.)

As Max walked out of the office, he bumped into a nurse who's known him since he was a kid and he gave her a hug.

"Max, I just love you," a nurse said.

"Fireman Max!" he informed her.


Tuesday, December 12, 2017

23 thoughts that go through your head when you find sprinkles all over the kitchen floor

1. How could someone not have noticed they scattered sprinkles all over the kitchen floor when they downed a slice of leftover birthday cake? OK, technically, the sprinkles are mostly by the fridge but still: they are glaringly obvious. You can't not notice them...unless you are the person who did this.

2. Was it your tween? Your partner? Totally annoying either way.

3. It's like they did a Mexican hat dance all over the sprinkles and ground them into the floor so that now some tiles have rainbow-colored grout and that's going to be even more of a pain to get out.

4. As if I didn't have enough to do.

5. It's like they were raised by wolves or something! Unless it was your tween who did this, in which case the wolf Oh.

6. I mean, how do you not see a huge scattering of blue, yellow, orange, green, red and pink sprinkles just lying there in plain sight? How how how how how?

7. Or, wait, did they notice and not care? That's practically evil! Double aaaaaaaaargh!!!

8. I wish I were a person who didn't notice sprinkles all over the kitchen floor and/or care, but I do, so even though it is 9:43 p.m., I am going to clean up the damn sprinkles.

9. Why am I the only person in the house who cares about the cleanliness of the kitchen floor?

10. Do people think the floor magically cleans itself? Seriously. WHO DO THEY THINK CLEANS THE FLOOR AFTER SNACKS AND MEALS? Only the two-year-old gets a free pass. At least until he's three.

11. Hmmm, what if I didn't clean up the sprinkles: Would they still be there tomorrow? The day after? Next week? Next month? Next year? Maybe one of these days I should conduct an experiment and leave the crumbs on the floor and see what happens.

12. But I don't think I could survive for more than a day with these sprinkles just lying there. I'm pretty sure this does not make me anal-retentive. I mean, wouldn't any reasonable person not want to see sprinkles lying on their kitchen floor, other than the people in my house?


14. And, wait for it, a dirty fork in the kitchen sink! Like, it would take them all of five seconds to toss it into the dishwasher. Why do they not have those five seconds? WHO DO THEY THINK PUTS ALL THE SILVERWARE AND DISHES THEY LEAVE IN THE SINK INTO THE DISHWASHER?

15. What did I do with all my free time before I had to clean up after everyone's mess?

16. Reminders don't work. Threats don't work. Begging doesn't work. Is there any known cure for families who leave crap all over the kitchen floor?

17. Getting down on your hands and knees to pick up the sprinkles, crumbs and other crud your family leaves on the kitchen floor is both demeaning and seriously undignified when you think about it and it also sucks whatever vestiges of fun spontaneous youthfulness you still possess right out of you because there you are, some lady crawling under the kitchen table with a wet paper towel at 9:47 p.m. attempting to mop up crumbs, so it's best not to think about it.

18. Then again: AS IF I DON'T HAVE ENOUGH TO DO.

19. Dustbusters are God's gift to moms but, sadly, they will not readily suck up rainbow-colored sprinkle grout or anything soggy or gloppy like pasta, rice, oatmeal, tofu and bits of fruit or salad. Don't even get me started on couscous. If someone invented a Dustbuster for soggy stuff, they'd make a killing. Meanwhile, I will persist in running the Dustbuster back and forth over the sprinkle grout or couscous or soggy whatever for at least a minute, hoping that somehow the Dustbuster will grab it but in the process, further pulverizing it so that by the time I finally give up on Dustbustering, there are now lots of pieces of soggy stuff. I will never learn.

20.  Too bad clearing away sprinkles, crumbs and other crap from your kitchen floor doesn't burn major calories because if it did, I'd look like Gigi Hadad. It is doubtful, however, that Gigi Hadad crawls under kitchen tables to Dustbust sprinkle grout.

21. I will not be looking like Gigi Hadad anytime soon, though, because now that I've cleaned everything up, I am helping myself to a big old slice of birthday cake. Maybe it'll help alleviate my rainbow-colored resentment.

22. You can be quite sure that I will not be leaving sprinkles on the floor for someone else to clean up. Because I am not that sort of person!

23. Not that anyone would notice if I left sprinkles all over the kitchen floor.

Monday, December 11, 2017

What you don't know when you become a special needs mom

Yesterday was Max's 15th birthday. Fifteen years of the cuteness, brightness, determination,  stubbornness, brightness, charm, curiosity and cheerfulness that is Max.

When he had a stroke at birth, I was traumatized. When doctors gave us dire predictions about his future, I despaired. When Max had developmental delays, I was worried sick.

I couldn't have known so much back then: about him, his future and the kind of parent I'd be.

I couldn't have known that having a child with disabilities wasn't the end of the world—it was an opening to a new one.

I couldn't have known that those doctors did not know everything. Yes, Max would grow up to have some physical and cognitive challenges. He would also have plenty of abilities. He is a mix of strengths and any human being.

I couldn't have known that I wouldn't just learn to accept, I'd forget. I don't sit around thinking about Max's cerebral palsy. Sure, there are times when I wish things came easier. The other day, Ben reached up to Max to pick him up and I felt a twinge of sadness; Max can't hold his toddler brother, because his arms aren't up to it. Mostly, though, I'm not thinking about the way his limbs move because he is just Max, my teenage boy. At times, he's a joy. At times, he is a pain in the any of my children.

I couldn't have known how much joy I'd find in the inchstones. Early on as a parent, I'd torture myself by reading about the developmental milestones—the ones Max wasn't hitting. Would he be able to sit up? Babble? Pick up toys? Walk? I came to take heart in the bits of progress, like when he could sit up supported by a Boppy, when he was able to prop himself up on his arms and then his legs and when he articulated an "m." Taking satisfaction in them was much more heartening then always wondering about the biggies. I quit looking at the baby books and the email updates, and learned to just focus on Max.

I couldn't have known how much strength I'd find in Team Max. I didn't set out to build it; I just tried to find the best doctors, specialists, therapists and schools I could. Some, like his pediatrician and pediatric neurologist, have been with Max since he was a baby. Others have come and gone. But always, I've felt grateful to have good experts guiding both Max and me, along with friends who've always been there to lend perspective, advice and a listening ear.

I couldn't have know how much strength I'd find in me. There is no training for motherhood, let alone training for being your child's advocate. Driven by the desire to give Max every opportunity to succeed, to enable him in any way possible and to make sure he had every asset on his side, I have researched, pushed, prodded, insisted, cajoled, begged, questioned and demanded to make it all happen for Max. I haven't always been successful and man, sometimes I am tired. But I don't beat myself up.  To paraphrase Mick Jagger, you can't always get what you want for your child, but you can try.

I couldn't have known what an outstanding father Dave would be. I was so worried about him in the NICU; I will never forget how he put his head down into his arms on the table when the pediatric neurologist told us that Max had a stroke. He's always been such a warm, loving guy and I figured he'd be a great parent, but he has been the most loving, hands-on, encouraging, do-it-all dad.

I couldn't have known that we'd be able to do typical family things. We go to events, we take trips, we go shopping, we have dinner out, we go to movies, we tease each other. We laugh a lot, we fight, we love—the whole family shebang.

I couldn't have known how enabling technology would be. We take Facebook, Instagram, blogs and our iEverythings for granted these days, but when Max was a little guy there was no social media, parenting blogs were just starting and his communication device was a clunky, heavy one that took forever to program. Then came the iPad and speech apps, which were game-changers for Max. I've found amazing community through this blog and in social media. And we're pretty much still at the start of the tech and online revolution; who knows what will come out down the road.

I couldn't have known that the grief would recede. Max's two weeks in the NICU will always be a painful part of my past, along with the bleakness I felt during his first year. But they are just that: my past. In some ways, they feel like another life I lived. Max is not that poor, sad child. I am not that sad mom.

I couldn't have known Max. Obviously, you never know how that baby you're holding in your arms will turn out. But when you've been told your little guy might never walk or talk and could have vision and hearing problems and cognitive impairment, it is especially impossible to picture a child who will turn out OK, let alone great. And that's my Max. Yes, I still worry about what the future holds for him, but I no longer worry about the person he is. And what a person he is. Max communicates, talking in his own way or using a speech app. He walks; he can't jump or climb, but it's no biggie. He can read. He has issues with fine-motor skills and works through them; when he can't, he knows to ask for help. He is better at directions than I am. He has passions—travel, dining out, movies—and a vision of someday being a firefighter. He's super-social and smiley, and to know him is to adore him.

I couldn't have known. Now, I do.

Friday, December 8, 2017

The Disability Blogger Weekend Link-up: Your posts with the most

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: Great gifts for kids and teens with disabilities: Holiday Guide 2017

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.

Thursday, December 7, 2017

Maybe the best napkin I've ever seen

The napkins were waiting for me on the counter yesterday when I got home from work. I'd been so excited to see them.

"Max, are you going to help make these for Sabrina?" I asked.

"Yes!" he said, super-excited.

The life skills and job training program at Max's school has students make products that are sold, with profits reinvested in the school and students; I'm ordering holiday cards that will pay for a graduation trip. They also offer custom napkins and hand towels for events. It is beyond awesome to be able to support the school this way; see ya, Zazzle!

Sabrina's bat mitzvah is coming up in March. (And, yes, it seems like Max's bar mitzvah was just yesterday.) I've been in touch with Max's awesome teacher at the program about ordering foil-imprinted ones—they have a machine that does that. First, she had to custom order a die (aka a stamp) of the logo we are using for Sabrina's big day from a photoengraver; she fronted the cost for me out of her own pocket.

I talked with Max about making napkins; I thought he might enjoy doing it. He loves going to the program at school; his teacher regularly lets me know that he always shows up with a smile, that he has a great sense of humor and that he's a pleasure to work with. Yep, Max. He is particularly fond of shredding paper. I get that; it's kind of fun. Me, I have a thing for label makers. I put labels on everything except my children because as crazy as life gets I still remember their names. For now, anyway.

As I learned during a recent conversation about Max's job future, he is sampling lots of different types of jobs at school. Who knows, he could be the world's first volunteer firefighter pro paper shredder custom napkin maker. I'm staying open-minded.

When Sabrina came home from basketball practice, she squealed when she saw the napkins. She liked a gray one with a turquoise logo best, so that's what we'll be ordering.

"Max, I want to order five hundred!" she told him.

"OK!" Max said.


Wednesday, December 6, 2017

Heard at our house this week

The list returns, back by popular demand! Dave is just as neurotic about Ben as he was two years ago! Max is obsessed! Sabrina won't get off her phone and is critical! Ben is talking! Nobody is still picking up after themselves and I am over it!

Heard at our house this week:

"Honey, Ben bumped his head on the door, do you think he's OK?"—Dave

"New choo-choo! ["I need a new toy/book/video involving trains!"]—Ben

"I think Ben is watching too much TV, his brain is going to get destroyed!"—Sabrina

"I'm oh-ing ooh oss vey ass!" ["I'm going to Las Vegas!"]—Max

"See all those crumbs on the kitchen floor? They are not self-cleaning crumbs!"—Me

"I smell poop!" [Dave/me/Max/Sabrina]


"I'm oh-ing have eeena alada en oss vey ass!" ["I'm going to have a pina colada in Las Vegas!"]—Max

"Honey, this morning Ben was holding a toy and he kind of poked his finger into it funny and do you think his finger is OK?"—Dave

"Fler aeary shimou fler fler!" [????????????]—Ben

"I am not on my phone all the time!"—Sabrina (when she tears herself away from her phone to talk)

"See those dishes sitting on the table? The maid is off tonight! Clean them up!"—Me

"A B C D E F G H I J L M P NO MORE S T U V Y Z."—Ben

"I'm oh-ing oooh eat at eni-hana en oss vey ass!" ["I'm going to eat at Benihana in Las Vegas!"]—Max

"Honey, I'm taking Ben to the pediatrician!"—Dave

"Mommmmmy, I need new tops/leggings/dresses/necklaces/headbands/all the clothing/all the accessories!"—Sabrina

"Ben, please do not throw your couscous on the floor! Ben! Ben? Sigh."—Me

"I'll all oooh ehn I'm en oss vey ass!" ["I'll call you when I'm in Las Vegas!"]—Max

"Ehn ohm-ing ooh oss vey ass?" ["When can Ben go to Las Vegas?"]—Max

"Yuuuuv you!"—Ben

"The socks/jacket/sweatshirt/pants are staying on the living room floor for the rest of our lives, because I am not picking them up!"—Me

"Honey, what's that bump on his leg?"—Dave

Tuesday, December 5, 2017

Torture by siblings

Me: "Ben, give Max a kiss good night!"

Ben: "No!"

This is typically how bedtime goes at our house, and how Ben and Max often interact. At two years old, Ben likes to tease Max. Dave thinks it's because Max takes the TV remote control away from Ben in the early morning hours (they both wake up around 5:30 a.m.). Ben wants to watch videos of trains, Max wants to watch fire engines.

If Max is headed toward the bathroom, Ben will run ahead of him and try to block his way. If Max is picking up something, Ben will push it out of his hands. There are times when Ben has actually attempted to push Max into another room.

Max shrugs this all off, in his usual good-natured way. Ben is just his pesky little brother.  And to Ben, Max is just his pesky older brother. While I wouldn't wish for others to treat Max this way, there's something to be said about not treating him with kid gloves because he's got disabilities.

It's been the same with Sabrina and Max, since they were tots. Even with Max's challenged fine-motor skills, he was able to swat her beloved pacifier right out of her mouth. In return, she liked to tell him his favorite color wasn't purple (it so was) and that he wasn't going to have a birthday party. She also liked to squeeze him really, really tight—aka the "death grip of love," as a friend with two girls once called it.

I'm not sure if Ben's behavior comes from any perceived jealousy of the extra attention Max gets; I know that Sabrina has felt that way, over the years. Or perhaps it really is all rooted in the battle over the TV remote control. Ben sure does love his train videos.

What I do know is that when Max gets home from school, Ben stands on the porch, gleefully shouts "Hiiiiiiiiiiii!" and waves his arms. And at bedtime, after I tell Ben to give Max a kiss, he refuses, Max starts giggling and I say it again, Ben climbs up on the bed and gives him a big old smoocheroo. And then, he gives him another one.

And then I tell him, "Say 'I love you!'"

And Ben says, "Yuv you!"


Monday, December 4, 2017

Sometimes, what's holding back our children is us

The school bus showed up the other week as Ben was having a meltdown. Typically, our sitter, Dave or I have walked Max out to the bus in the mornings. From our house to the curb is not far, maybe 50 feet or so. This is the way it's been for years: We walk Max to the bus.

Only on this day, out of necessity, I decided Max was going to do that walk alone. I carried his rolling backpack down the stairs for him. And then, I told him to head to the bus by himself. He flashed me a big grin.

Carefully, he held onto the porch railing and walked down the four steps. Then he grabbed the handle of the backpack and headed over to the bus. The aide helped him get his backpack up. He grabbed the handle on the bus's steps and got himself up there. Then he turned around and gave me a little wave.

First thought: He did it!

Second thought: What took us so long to let him go it alone?

Routines are usually a good thing for Max—it's comforting for him to know what's happening and when. But they're bad in that we all get used to the status quo, and I neglect to encourage independence. It's typically not something Max seeks; we usually have to suggest it. Once we do, though, he's eager.

I've been doing my best to break out. A couple of months ago, I encouraged Max to open the car door and scoot onto the seat. We're still working on fastening his seat belt, and opening the car door handle to get out. During the summer, he walked to a lemonade stand on the next block alone. When his friend Avi comes over to hang out, the two of them go for walks by themselves. 

Over the years, Dave and I have admittedly been slow to stop doing stuff for Max—not because we were reluctant to, but because it was part of our routine and we were on auto-pilot. Feeding Max, holding cups for him, brushing his hair: We had to force ourselves to let go.

I need to keep setting my mind to this, and busting out of the same-old routines. I'm betting Max will start leading the way. This weekend, he wanted to pack for his Las Vegas boys' trip on Thursday. The carry-on luggage was already in his room.

"I'll be there in a few minutes, Max, I just need to get a few things done," I told him.

A couple minutes later, I heard banging. Max was trying to lift the suitcase onto his bed, and succeeded just as I walked in. We zipped it open, hand over hand. He grabbed the pile of clothing that's been sitting on his chest for months now (because he needed to be prepared!) and dumped it all into the suitcase, a technique he inherited from his dad. We zipped it closed together.

I likely would have packed for him otherwise. But Max showed me the way.

Friday, December 1, 2017

The Disability Blogger Weekend Link-up: Go for it!

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: Great gifts for kids and teens with disabilities: Holiday Guide 2017

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.

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