Thursday, February 28, 2019

The flashbacks still take me by surprise


Doing the dishes the other night, I stared at the vase of pink alstroemeria on our kitchen table. I buy the flowers occasionally from Trader Joe's; they're just $3.99 a bunch and they last close to two weeks. I wondered about the sunny vase—I couldn't recall where it had come from. The stripes reminded me of another smaller vase, a blue striped one. Where had that one gone?

WHAM. 

Dave and I have just parked the car outside our front door. It is our first time home from the hospital since we had Max. He is in the NICU, unconscious and hooked up to tubes. We are still in shock and devastated. What's happened to Max is a nightmare come true, and it feels even more painfully real now because we have arrived home without our newborn. We don't know exactly what the future holds for Max, but the NICU doctors have told us the worst. It is hard for us to believe that the perfectly pink, pudgy baby in the incubator has extensive brain damage. 

I walk up to the front porch. There is a pan with aluminum foil on it—a neighbor has left a lasagna. There are a couple of packages, too, and a pretty little blue striped vase with flowers from a colleague at work. Everything sitting out there looks sad to me on that gray December day, yet more evidence of what Dave and I have been through.  

I walk into the house. The silence is oppressive. Then I walk upstairs to Max's room, painted Kelly green because we didn't know whether we were having a boy or girl. The color I chose because I thought it looked so happy and cheerful. I pull the door shut, fast. I know that I will not be able to bear to keep walking by and seeing the empty room. 

And that's all that I remember of that day. The flashback ebbs away, along with the hurt, and once again I am focused on the dishes and considering whether I'm going to catch up on The Walking Dead when I'm done or finish the book I'm reading, A Man Called Ové.

The sad memories don't materialize very often. When they do, though, I feel them to my core, as sharp in my mind as if they had happened the other week. And I am surprised that they keep coming, sixteen years later. They are such a disconnect from the life Dave and I enjoy with our three children, and how lucky we feel to have them all.

Wednesday, February 27, 2019

File under: children's books with really bad messages


A children's book with a message about self-acceptance: What could be bad? You have to read it to believe it. Too bad Ben and I did last night.

Ben adores a book called Put Me In The Zoo. It's from the Beginner Book series cofounded by Ted Geisel, aka Dr. Seuss. The book is about a leopard named Spot who's determined to get into the zoo and shows two kids all the tricks he can do with his spots. Turns out he's better for the circus. And he didn't even have to use LinkedIn! Spot and friends return in a sequel called I Want to Be Somebody New! in which Spot decides he's had enough of the circus life and decides to experiment with new identities. It sounded cool, and I got it for Ben without a second thought.

At bedtime last night, we settled into the rocking chair in his room to read it. In his quest for a new him, Spot transforms himself into an elephant. This is not OK with either of the two children, who are dressed in outfits seemingly designed by Dick and Jane. "Being that big cannot be fun!" they note. They point out stuff Elephant Spot can't do—walk on a fence, squeeze between circus tents and, heck, get into the door of his house. And then these children, who have turned quite obnoxious since the original book, rant on: 

You cannot sit
in your old chair.
Your new rear end
won't fit in there.
You're very big.
You've very fat.
We do not care
for you like that.

WHAT?!

Oh, but Elephant Spot cheerfully accepts all this: "Every word of what you say is true." So he tries again, morphing into a giraffe. The kids aren't having any of it:

Being that tall can't be any fun.
You're taller now than everyone!
Your head is now so high in the air,
It's hard to see your face up there.

HUH?! Is this book actually a Dr. Seuss parody? I check the front pages. Nope, it's real and written in 1986, not 1956. And it's by the same guy who wrote the original book, although there is the possibility that Donald Trump ghostwrote it. I'm tempted to just close it, but instead make up words as I read to Ben. Spot's identity crisis continues and this time, he turns into a mouse. Now he's "much too small" and (nah-nah-nah-boo-boo) he can't even open up his front door! And people put traps inside their homes to catch mice, the children inform him. !!!

I am half-expecting Spot to turn into an amputee dog at which point Jane Judgmental and Dick Dick proclaim:

Being a dog with three legs
Makes you hobble when you pace
Why, you couldn't even enter
A four-legged race!

The book ends (trust me, not a spoiler alert) on a relatively more positive note as those darling children ask Spot to be the old friend they liked. "Show us what we want to see!" they beg. And Spot decides they are right and declares "It does feel best to be just me!" And they all lived happily ever after in their warped, wrongheaded world.

As the parent of a child with disabilities, I may be sensitive to negative messages about people who aren't seemingly perfect. Really, though, any parent should take exception to reads like these. Kids learn that it is not good to be overweight, tall or small. And that if someone doesn't appreciate your efforts at changing yourself, then you should keep trying to make them happy. And that spots are not your best fashion accessory. Who in their right minds at the book company—it's an imprint of Random House, a biggie—decided that this book is beneficial for impressionable young minds?  

A bunch of reviewers over on Goodreads agree with me, but there were many more who thought this was a great book for introducing children to positive thinking, pride, being yourself and unicorns. OK, not unicorns. People also appreciated the "fun" rhymes. Which is sort of like saying the propaganda the Nazis spread during WWII was well written.

Ted Geisel passed away in 1991; maybe he was already checked out when this book was published? Maybe he wasn't overseeing books that were part of this series? I can't imagine he would have endorsed it. I don't even know what to do with this book because I can't bear to give it away and risk another child reading it. I'm not one to toss books, but this might be my first. For now, I'm hiding it in the attic.

A is for Aargh! B is for Boo! And C is for Come on, book publisher, stop printing this crap!

Tuesday, February 26, 2019

Having children with a big age gap and the stuff nobody tells you


"Oh, is he your little surprise? Ha ha ha!"

"Is he from the same husband as your other two, if you don't mind my asking?"

I've gotten used to the questions—they don't faze me. What continues to take me by surprise: the dynamics of juggling children with a big age gap. Sabrina just turned 14, Max is 16 and Ben is 3. Our family feels complete...and also, at times, like a circus.

This is the stuff nobody told me about having children with a large age gap. Not that I asked.

You delude yourself into thinking you already have all the baby stuff  

The drop-side crib we had for our first two was actually a death trap, according to the Safety Product Commission people. Their stroller is long gone. And you wouldn't think baby clothes would look that outdated in a decade, but they sure do. So we basically started from scratch with baby clothes and gear. It was fun, other than having to decide between the eleventy billion things that didn't exist last time around, and paying for them.

You become a born-again mom

When Ben was a baby, Dave and I were like new parents all over again—we did not remember much of anything about childcare. This was evident from the day Ben arrived home from the hospital and we had to google "How to give a newborn a bath." Then we roped in Sabrina and Max to help. Cleaning bottles, sleep training, the timing for baby milestones: no recall whatsoever. The momnesia continues now that Ben's a preschooler: Wait, why's he having temper tantrums at age 3? What is up with catching nasty stomach bugs at preschool? Why does he love putting his fingers by the cabinet door hinges? Why will he only pee in the potty? Oh, wait, this sounds vaguely familiar (a phenomenon known as deja poo).

The schedules are out of control

Sabrina has basketball. Max needs to go to a program. Ben's coming along for the ride. Getting everyone to their activities leaves me dazed. I knew to expect this, but still: OMGeeeee. When other parents offer to drive one of my children somewhere, it's like I won the lottery.

Trying to find something all our children want to do? Bwaaaaaa ha ha ha ha


On weekends, DH and I are usually in conquer-and-divide mode because there's just no figuring out an activity one preschooler and two teens will be into. If Ben has a little-kid birthday party, I'll take him and Dave will hang with one or both of our other two. Or Sabrina will stay home to slog through schoolwork, and the rest of us will do something intellectually stimulating like shop at Target. Dining out is pretty much the one outing we can do as a family, although we no longer go to nice restaurants because:


THE DRAMA. Ohhhhhh THE DRAMA.

As if dealing with the hormones of a teen girl and a teen boy aren't enough, I am also faced with the  a preschooler dictator who is prone to screeching "YOU NO DO THAT!" and "YOU NO SAY THAT!" Then there are the times when Sabrina and I are having it out because I'm being mean and making her clean her room or something and poor Ben is witness to it. "No lelling!" he'll say. ("No yelling!") And I'll wonder how many years of therapy Ben is in for.

It's great having a built-in babysitter...except when your child acts like she's the mother

Ben's big sister is his BFF. He runs to the door with a squeal when Sabrina, aka "Mena," gets home from school. He sits on her bed and chills while she does homework. She watches him when I go out to do errands, plays with him when I'm cleaning up around the house, gives him baths, loves picking out his outfits and is generally an awesome big sister. And then, there are the times when she decides she is actually his mother.

Me at 6:30 p.m.: "Ben needs a good snack, he didn't eat so much today."
Sabrina: "Benny, want some ice-cream?"
Me: "It's not a good idea for him to have so much sugar before bedtime."
Sabrina: "But the sugar will fatten him up!"
Me: 😳

Then there's the sibling rivalry

"Mommmmmy, I need you to build a tower !" That is Ben asserting himself at the exact moment that I've sat down to help Max with his homework at the kitchen table. Reasoning with a three-year-old is impossible. And so Ben will wail as Max attempts to get through his worksheets. Ben also does not like it when Max or Sabrina walk downstairs before him, when they get into the car before him, when they do anything before him. You wouldn't think there'd be much rivalry when two kids are 13 years apart. But.

Some of your child's bad influences are right at home

Our little guy ends up watching and listening to stuff way beyond his years when I'm not paying attention. Which explains why his favorite song is a rap song called Steal Her Man. He has substituted some nicer words.


There's a whole new generation of TV fights 

For years, Max and Sabrina duked it out for the Battle of the Remote Control. She wanted to watch teen sitcoms. He wanted to beam YouTube videos of fire trucks onto the screen. Now Sabrina's glued to Instagram, and Max and Ben go at it. The other day, as Ben tried to watch Sesame Street, Max stood in front of the TV with his arms outstretched to block it. Ben, meanwhile, likes to grab the remote control when Max is watching TV, turn it off and run away with it. Good times.

You will still be forced to endure the torture known as Thomas the Tank 

How is it possible Thomas the Tank is still on TV and kids still like watching him? Not. Fair.

You suck even more at sleep deprivation


Ben gets up at 5:30 a.m. because he didn't get the third-kid memo and Dave, my angel husband, gets up with him. And when Dave goes away on business and it's me rolling out of bed at that ungodly hour, I am all I am too old for this.

Sometimes, it gets lonely

My longtime friends have middle- and high-school-age kids, so playdates are pretty much out of the question. Then there's the fact that I'm going through stages they can no longer relate to. When we all had young kids, we sat around and talked about potty-training, pacifier obsessions and other challenges, but that just doesn't cut it as dinner conversation anymore.

There are now three human beings who think you are the worst and who happen to be your flesh and blood

"I hate you!" says Max.

"You're the worst mother ever!" hisses Sabrina.

"Mommy not nice!" says Ben.


But then...


Your little one is the best gift ever, for everyone.

No matter what chaos is going on, there's Ben—our feisty, funny, adorable, big-eyed, kissy-lipped, wise-beyond-his-years sweet boy. We each have our own special relationship with him.

Right after we brought him home

A toddler daddy all over again

On our last vacation

At Ben's third birthday party

I love how Dave, Max, Sabrina and I look at each other and crack up whenever Ben says something adorable.

I love the cuteness overload when I see Sabrina or Max playing with Ben.

I love the way Max looks after him.

I love when we teach him to do random stuff, like giving the side eye (oh, yes, we did).


You're a more chill mom. 

Some also refer to this as Third Child Syndrome. He's eating off the floor? NBD. Walking around in dirty clothes? About to jump off the bookshelf? Whatever.

You relish a thousand little things you never thought you'd do again with a little person

It's all amazing: pushing Ben on the swing at the park, rolling toy trains around tracks, doing This Little Piggie on his toes and pretending to take his nose, singing Laurie Berkner songs in the car, making Play-doh creations, sleep-stalking him because he looks so sweet, seeing the sheer delight on his face when he's on a swing or gets a lollipop, walking down the street and holding his little hand, answering his constant "why?" questions, chatting with him in the car, cuddling on the couch and watching Sesame Street, coloring pictures on the kitchen table, getting his hair cut with little-boy bangs, making up nonsense songs or just listening to him talk in his little voice,  the way he runs into my arms when I pick him up from preschool, reading to him at bedtime in the same rocking chair I had for for my olders. Oh, the snuggling.

Bonus!

We had the right girl/boy ratio to do this on Halloween.


Not to mention!

People like the guy at the pizza store where I take Ben every Friday after preschool, who upon finding out that I have two teens said, "Wow! You look so young!"

Life is a wacky whirlwind. And I wouldn't trade it for anything.

Monday, February 25, 2019

In which Max gets an iWatch and calls me all the time


We've been meaning to get Max a tracking device, mostly so I know his whereabouts when he's on his school bus. We've also been wanting to get Max a phone—his teen sis has one, and we felt it was only fair. But manipulating it is hard for him. So we started looking at the Apple Watch and this weekend, got him one. Everyone's into it.


Thanks to the Find My Friends app, I will be able to tell where Max is at all times. But I suspect I actually won't be needing it much because Max has been calling approximately every 12 minutes.

"Hi, Mommy!" he'll say when he calls from the car. 

"How are you?" he'll call and ask from the other room.

Me: "Max, why are you calling me while you are sitting on the couch next to me?"
Max: "Ha ha ha ha ha!"

"I want to move to California!" he'll inform me when he's at a restaurant with Dave. Ever since their boys trip last week to Disneyland, he's ditched his dream of moving to Orlando and has switched to California goals. Dave decided to enable this fantasy by getting Max a California phone number. At first, I ignored his calls because Santa Monica kept popping up and I thought it was spam.

When Max is not calling, he is checking the weather in California, texting and asking me to call him or letting me know other important information.


Some controversy has cropped up. When I ask Max what time it is and he'll tell me, say, 8:39, Ben will disagree. "No, it's 8:37!" Ben will proclaim. This despite the fact that Ben has no clue how to tell time, but he is very much into sibling rivalry.

Max is so excited by this gadget that I am now only allowed to call him when he and Dave are out together. I am excited by his dexterity—he's doing a great job navigating the screen. Isolating his pointer finger is something his occupational therapist worked on for years when he was a tot. Max is still figuring out how to press the button on the side of the watch, which takes you back to the home screen.

Once again, I'm feeling grateful for technology that opens up worlds for Max. Oh, and if anyone needs me, I'll be on the phone with Max.

Friday, February 22, 2019

The Disability Blogger Weekend Link-up is good to go


What to do if you're new  

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: A person with intellectual disability denied an organ transplant

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, February 21, 2019

33 ways to feel more chill when you're stuck in the same-old life


Viral cat videos. There are always viral cat videos. And ones with kids doing funny stuff. These are fast lifter-uppers when I feel overwhelmed but don't have much time to relax. Dabbing a citrus essential oil on my temples and the back of neck also gives me a boost. Most awesome of all: when my DH takes our children out for a couple of hours over the weekend. Being alone in the house—and being actually able to actually hear my own thoughts—zens me out, even if I end up just picking up after everyone.

I recently asked my Facebook moms group what helps people chill out during their nonstop days. These are the go-tos that never fail to bring the calm, at least for a little while. Who knew tapping was a thing?!

1. "Facing the sun. I open the shades and just face it, like I am tanning myself."

2. "Listening to music while taking a hot shower."

3. "Planning my next trip, no matter how far off it is."

4. "The Headspace meditation app."

5. "Talking to someone who I know will make me laugh."

6. "Petting my dog—or, if I'm out of the house, looking at photos of my dog that I keep on my phone."

7. "Coloring in one of those finely detailed adult coloring books."

8. "Hugging my peeps."

9. "Podcasts! My recos are Happier, Code Switch and My Dad Wrote a Porno—I've laughed so hard I almost drove off the road. Believe me there is really nothing sexy about it, you'll laugh your butt off."

10. "EFT—the emotional freedom technique, which involves tapping."

11. "Cooking a meal I've never made before."

12. "Getting lost in a book."

13. "Fresh air! Taking a walk. And chocolate, of course."

14. "Weirdly, even if it's 50 items long, writing a list of everything that I feel stressed about or that I need/want to do gives me comfort."

15. "When I need to shut down for a bit I use a hypnosis app by Andrew Johnson called Relax."

16. "Sorting through piles of mail."

17. "Trashy TV—The Bachelorette or Housewives."

18. "Wheel-throwing pottery—I take classes."

19. "Going for a drive."

20. "Brewing loose leaf hot tea."

21. "Doing puzzles."

22. "ASMR videos."

23. "Running is lifesaving. I'm not even very good at it, and my hips sure do hurt, but it still grounds me like nothing else."

24. "My husband holding my hand."

25. "Working in the yard."

26. "Doing something creative—taking photos, writing poetry, silly dancing with my girls."

27. "Carole King's Tapestry album."

28. "A session with the Calm meditation app."

29. "Eating pudding."

30. "I don't feel like I can ever relax properly at home, even if someone is watching our son. It's like there is always something to do or on my mind. I need to get out! Massages, swimming laps, attending a meditation class."

31. "Knitting, especially an easy pattern where I don't really have to think too much."

32. "SoulCycle class or a pilates session."

33. "Going to bed early!"

Wednesday, February 20, 2019

A person with intellectual disability denied an organ transplant


The other night, I was talking with someone about the tough time I went through after Max was born. I noted that nothing had prepared me for having a child with disabilities. Growing up, I didn't know any children who were disabled. Over time, I got the sense that society largely considered people with disabilities lesser human beings, and then realized it once I had Max. In the sixteen years that I've been raising him, attitudes and perceptions have shifted—but we've still got a long way to go, as is evident from a story making headlines.

In the fall of 2018, the Office for Civil Rights (OSR) at the U.S. Department of Health and Human Services received a complaint that involved an individual with intellectual disability, according to a statement the OSR released. This person was in need of a heart transplant, but an on-staff doctor at the University of North Carolina Health Care system had deemed they were not a good candidate for the United Network for Organ Sharing (UNOS) list. Why? Because of their developmental learning disabilities and the fact they do not live independently. The complaint noted that the person would eventually die without the transplant.

My heart ached when I read that. This person is similar to my Max, who has intellectual disability and who will likely not live independently as an adult. Max is a happy, enthusiastic, adventure-loving boy. He is full of life, and to think that anyone would deem someone like him unworthy of living is really, really hard to wrap my head around. To be sure, there are doctors out there who have a God complex. But it is not within anyone's right to decide who gets to live and who gets to die based on a person's abilities or their genetic makeup.

Sadly, there is a long history of denying people with intellectual disability organ transplants (here is a helpful guide for parents and other advocates). As hard as it is to believe there's a need to state something this basic, here goes: No person deserves a death sentence because of a disability.

Earlier this year, the UNC Health Care system agreed that the medical records of the person in need of the heart transplant would be amended, and it would be clear that they are eligible for placement on the transplant list. Also: The Office for Civil Rights will be providing assistance to them on the development of their transplant eligibility policy. i.e., teaching them to get a clue. Hopefully, the news about this case will make other health care systems think twice about any dubious decisions concerning people with disabilities.

Disability rights and doctors have been on my mind because last week, I chatted with disability advocate Sheryl Grossman, who was preparing to fight the potential legalization of assisted suicide in Maryland. Sheryl has a rare genetic condition. , "I know the societal barriers—stigma and discrimination—that we face," she's testified. "Our lives are often seen as being worse quality of life and less worth than others. Doctors' whole profession see us as broken and something to be fixed." She tells of a doctor who once said to her, "I don't understand why you want to live like this, in and out of hospital for years." The answer, Sheryl says, is "I love my life." It is wrong, so wrong, to judge the challenges people with disabilities deal with to be ones that completely obliterate their quality of life.

As parents of children with disabilities, we often see worth that other people may not. And yet, my news feed is filled with accomplishments. A woman becomes the first openly autistic person to practice law in Florida. A woman with Down syndrome finishes her third Austin half-marathon. A third-year student at William & Mary Law School with autism will compete to become the next Miss Virginia. A young girl with cerebral palsy walks the runway at London Fashion Week. And that's just the stuff I caught. Every day, everywhere, people with disabilities make a difference in this world. Even when they are not doing anything particularly notable and just existing (you know, like the vast majority of humanity), they have a right to life as much as any of us do.

The hippocratic oath that many medical students take states, "I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous." I'd say that condemning someone to die for having an intellectual disability is way more than "deleterious." As OCR director Roger Severino said, "Every life is precious and no one should be blocked from access to an organ transplant because of stereotypes about persons with disabilities."

Tuesday, February 19, 2019

Just two boys on a joy trip to California


Dave and Max have this boy trip thing going on. It started four years ago, when Max got it into his head that he wanted to visit Chicago. Dave cashed in some airline points, and off they went.

Then Max set his sights on Vegas, and to this day we are not sure why. And so, Vegas, baby!. After that, Max snookered Dave into taking him to Florida—Dave has a friend who lives near Orlando, conveniently enough. Saturday, the two of them headed to California, to visit Disneyland and another friend of Dave's in Studio City—Max has winter break this week. He looks ecstatic in every pic Dave has texted me.




I just adore that the two of them are traveling buddies. Five years ago, when Max first visited Disneyland (basically a pilgrimage for him, because he was obsessed with Lightning McQueen), I don't think any of us could have imagined that there would come a time when Max and Dave would be jet-setting on their own.

Max no longer gets restless on plane rides. He has more stamina for walking around. He doesn't get that distressed by crowds. He's not scared of rides at theme parks—he even went on that Disneyland bobsled roller coaster, the one in the dark. He likes to stay up late. And he's happy to be off on an adventure. Actually, thrilled.

From our 2014 trip: Max's I'm-not-so-sure-about-this-ride look. I miss those cheeks.

My dad loved to travel, and he passed that along to me. Now Max has wanderlust, and it's all sorts of amazing (thankfully, Dave has a stash of air miles built up from business trips). Travel is an education all its own. It heightens Max's curiosity about life, and emboldens him to try new things. Dave told me that at breakfast yesterday, Max made his own waffle. He'd walked up to the machine, poured in a cupful of batter, closed it and turned it. Dave helped him get it out.

Those of you who know Max likely have a question on your mind at this point. And the answer is: Yes! Max would like to move to California.

Friday, February 15, 2019

The Disability Blogger Weekend Link-up: read on


What to do if you're new  

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: Teachers being this cruel to children with disabilities: just despicable

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, February 14, 2019

Valentines for people who enable my child with disabilities and even those who don't


To my daughter and little guy: This valentine is for you for being siblings who help, tease, hug, push, insult and otherwise treat their big brother like any sibling.

To All The Therapists: There are not enough valentines in the world to thank you for guiding, enabling and encouraging my child—and for showing me how to enable him. I heart you with all my heart.

To the secretaries and assistants at the specialists offices: This valentine is for finding a way to squeeze my child in despite the fact that we were told there were no openings for, like, 50 years.

To the parents whose children speak with my son like they are talking with any peer and who do not act demeaningly or talk in a baby-ish way: a valentine to you for raising your children right. They will be better people because they understand that there is a glorious range of abilities, and that's what makes the world a good place.

To my friends, who are always there to listen to me vent about the challenges of raising a child with disabilities and offer me perspective. You make me a more sane mom. ❤️ you!

To the teachers at Max's school, including the ones who stay late to run programs: a valentine to you for all that you do. There is a reason he is excited to go to school every single day. 

To the people who run Friendship Circle and other programs Max loves: our hearts are full of gratitude for you.

To the people who have refused to include my son in activities and programs: this is a valentine for you because you need a heart.

To my mom and sister: You have been Max's cheerleaders literally since day one. I went through the hardest time of my life after he was born, and you were there to make me focus on how cute he was, feel less anxious about his future and do laundry. Your valentine is for having the most loving hearts. BTW, you are still welcome to do laundry.

To the firefighters at our local station who always happily greet Max when he visits, call him Fireman Max, let him check out his favorite truck (#31) and treat him like a friend: you're the best, and this valentine's for you.

To all the babysitters: I LOOOOOOOOOOOVE YOU AND ARE YOU FREE SATURDAY NIGHT?

To the people I've connected with on this blog and Facebook who've commiserated, comforted and offered tips on everything from the best socks for orthotics to dealing with school bus situations: here's a Valentine to the nicest, most supportive people I have never met.

To anyone who gives me iced-coffee: Thank you from the bottom of my sleep-deprived heart for keeping me on life support.

To the teacher who continuously referred to my child as "smart guy"—you made him truly believe in himself, and so you're both our valentines.

To the staffer at the orthopedist's office who went there at 4:45 a.m. on a cold December morning to accept a very delayed delivery from FedEx of Max's orthotics because we were leaving on vacation and needed them: this valentine's for you because you are supremely awesome.

To the people who offer my son donuts and other free stuff because they feel sorry for him: this valentine's for you because although your heart is in the right place, your mindset is not. Please do not pity my child. He is happy with who he is. I love him for who he is.

To the staffers at the camps Max attends every summer who make him gleefully happy: A great big valentine to you, sandwiched between a s'more.

To the school district coordinator who has guided me through IEPs and made sure my son is getting what he needs and deserves at school: I adore you for all the heart and soul you put into your job. Happy Valentine's Day!

To the guys at the car wash who let us run our car through three times in a row when our son was obsessed with car washes and only charged us for one: here's a valentine. Every time we drive by, we have feels.

To Dr. Doom and Dr.  Gloom in the NICU: When you told me and my husband the worst about our child when he was born, it took a long time for us to find hope in our hearts. This valentine is for you because I forgive you. Also: YOU SHOULD SEE HIM NOW.

To my husband: You are my best friend and Max's too. Who else is going to roam around with him at Home Depot on Sunday nights? Take him on a joy trip to California just because? Make sure he gets regular fixes of eel sushi? Y-o-u. Women often say that they fell in love with their partners even more once they saw them as parents. I know that feeling: I can still picture you standing in the delivery room holding Max and staring wondrously at him and how blissed out that made me. I can also picture just how devastated you looked when we found out what happened to him—and how you have been there for him every single step of the way. My love for you continues to grow because you are the most supportive, caring, empathetic, loving dad. And also because you bring me iced coffee.

Wednesday, February 13, 2019

He says it's easy, and who am I to disagree


Max may have been the only teen in the U.S. in recent history who did homework with Barry Manilow in the background. Our sitter loves him, and Max is now into Barry  as well. I mean, "At the Copa! Copacabana!" is not the worst background music for doing math, although I draw the line at "Mandy."

Anyhoo, Max usually uses his iPad and SnapType for homework. His teacher at school takes a pic of a worksheet with the app, and then Max can type or write on it. She sends the worksheet home, too, just in case. The other night, after Max had typed some prices on a money worksheet, he grabbed his English worksheet and said he wanted to write out the words.

Max's writing is getting increasingly legible, but in my mind, typing things out is easier for him.
When he writes he's grasping the pencil with all his might (it's wrapped in foam tubing) and focusing hard on forming letters while his right hand—his less strong one—holds the paper in place.

"Why do you want to write if you can use your iPad?" I asked.

"It's easy," he said.

I was about to point out that using the app was easier, but I stopped myself. I mean, I had no place telling him that—it's my perception. If he believes writing is easier, then it is. I think pride may play into it. Max has been working on handwriting in OT at school, and he's pleased with himself that it's coming along.

It's true that his teacher would find typed text more legible, but this particular assignment involved breaking down compound words and she'd be able to discern he'd gotten the answers right so I also held back on pointing that out. Perceiving how other people perceive him is generally a work in process for Max. He often insists on speaking even his speech app is handy, because he wants people to understand his speech.

For whatever reason, right now Max finds that handwriting words for homework is easier. And so be it.


Tuesday, February 12, 2019

Teachers being this cruel to children with disabilities: just despicable


"I ought to backhand you right in your teeth. How is that for anxiety?"

"I'm going to pull your hair until you start crying."

If you think that's dialogue straight out of a TV prison sitcom, you are sadly wrong. That is the sound of two instructors in a special education classroom talking to children, as reported by WJLA news. They were exposed by the mother of a 6-year-old girl who has autism and is nonverbal. Mom Amber Pack sent her daughter in with a hidden recording device in her hair after the child didn't want to go back to school.

"Don't throw it. Don't throw. You animal you."

"You wench. You're like a pygmy. You're like a pygmy thing."

"I'm'ma a knock you out."

The school is Berkeley Heights Elementary School in Martinsburg, West Virginia. In October, Amber posted a brief clip on her Facebook page from the eight-hour recording. (At minute 1:36, you can hear a woman saying "I'll punch you in your face" and at minute 1:52 you hear "shut up.") While the investigation continues, the local Prosecutor's Office found no criminal wrongdoing—under West Virginia law, verbal abuse of children is not a criminal act, notes The Journal. (From what I've read, states handle situations like this in different ways.) The Office for Civil Rights of the U.S. Department of Education has opened its own investigation.

The instructors' behavior isn't just assault, it's bullying. In some instances, when bullying is based on disability, race or ethnicity, color, national origin, sex or religion, it overlaps with harassment and schools must legally address it. (Here's more information on StopBullying.) 

Amber's daughter and another child in that class have since moved on to other schools. Three of the instructors involved are on paid administrative leave. 

You're an educator? As in, you've signed up to work with children? Children with disabilities, who can be extra vulnerable? And you think it's OK to threaten them with bodily harm and call them names and be derisive and demeaning toward them?

Despicable. 

Verbal abuse can be just as harmful as physical abuse. And children with disabilities are thought to be abused more frequently than children without disabilities, according to the nonprofit Prevent Child Abuse America. "Children with disabilities may be perceived as less valuable than other children," notes the group's fact sheet. "Discipline may be more punitive and accompanied by a lack of respect."
Sadly, this is not an isolated incident—reports of teacher abuse crop up in the news on occasion, often involving students who have autism.

To be sure, the instructors in the West Virginia incident are just a few bad eggs. They should sll be fired, at the very least, and made to permanently stay far away from students. Even if they are never found guilty in a court of law, I hope they can do some reflecting in the court of their souls. 

Monday, February 11, 2019

A virtual reality experience of what it's like to have autism


You couldn't possibly know what it's like to have autism or cerebral palsy or Down syndrome unless you are a person with autism or cerebral palsy or Down syndrome. But maybe if people had some sense of what it's like, they might have a better understanding of people with disabilities. That's the idea behind the Autism Reality Experience (ARE). For the last couple of years, the mobile van offering the virtual experience has traveled around England and Canada, and it's making a visit to the United States in March.

The ARE was created with input from people with autism. Families and professionals alike have been trying the experience, which includes a sense of what the sensory processing challenges people with autism feel like. Participants wear gloves and headphones, watch a video with noises as lights flash and then perform a series of tasks. There is a three-hour program option that explores people's reactions to the experience and how senses can be affected by autism and offers anxiety reduction techniques for autism and behavior management techniques.

Here's the anchor of a Canadian morning show checking out the ARE:


I'd hope that anyone trying the experience is made to understand that no two people with autism are alike, and that the stimulation of sensory overload isn't the exact reality of how people with autism experience it. Still, there is a real lack of understanding out there of why people with autism and other disabilities behave the way they do, and hopefully it will open minds.

The Autism Reality Experience will be doing a three-day tour March first through March 3 at ReClif, a fitness-based therapy and community center for people with autism (here's more info).

Image: Autism Reality Experience

Friday, February 8, 2019

The Disability Blogger Weekend Link-up is here for you


What to do if you're new  

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: Officers calm an autistic man by singing and dancing: what people can learn from this story

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, February 7, 2019

Officers calm an autistic man by singing and dancing: what people can learn from this story


In my sixteen years of raising Max, I've had a fair number of encounters with strangers who stared, made comments about Max or otherwise acted rudely. But I've also had some great moments with ones who have treated him respectfully and accommodated his needs. I still remember the Transportation Authority agent at the Orlando Airport who helped us navigate the security line before Max melted down. "I have a child with autism," she told me. "I know how it goes."

There are good, decent people everywhere, of course, but there's nothing quite like connecting with ones who have children with disabilities in their families. They just know. I was reminded of this because of a story in the news. Ellen and Robert Hughes live in Chicago with their son Walker, 33, who has autism. Walker is a "gentle" type, as Ellen notes in her blog On Autism and Other Things, but he'd been acting violent one recent day and they headed to the hospital. They'd later find out he'd been having a reaction to medication.

As the family entered the ER at Loyola Medical Center, Walker bit his mom's hand hard. She screamed and suddenly a group of safety officers converged on them. "Like all autism parents, especially those with jumpy, nonverbal, 6'3" guys like our son Walker, my husband Robert and I can easily imagine how things often can go wrong very quickly when the police get involved," she wrote. That brings to mind Robert Ethan Saylor, a 26-year-old man with Down syndrome who grew distressed at a movie theater; police handcuffed him on his stomach on the ground, and he died of asphyxiation.

Things were not going well. Walker tried to jump off the examination table and escape. Instead of restraining him, though, the officers turned it into a game. As Ellen described it:

"Walker gets up!" they cheered.
They helped him sit back down.
"Walker sits down."
And he did.

"Walker scoots back."
He did.

"Walker lies down."
Yes!
"High fives all around."
And, amazingly, Walker smiled and high-fived every one of them.


The officers repeated the routine again and again. Then they sang to him and danced. By the time Walker left, he was calm.

As it turned out, a sergeant on duty at Loyola that night had a son with autism, reports Chicago Tribute columnist Mary Schmich. When Walker mentioned Mary Poppins, he realized that music could help, why he sang everything to him from the Mr. Rogers' theme song to James Brown. Sgt. Miller stayed by Walker's side the entire time, and he was "clearly essential to this success," Ellen said.

The Hughes were lucky that Sgt. Miller was on call that night—but this wasn't just about him. The officers around him had a handle on how to respond, too, because Sgt. Miller had trained them. He'd taught them, among other things, that no two people with autism are alike and to gauge responses accordingly.  "It's amazing what a team of highly-trained, combat-ready, loving policemen can do," Ellen observed.

As the parent of a child with disabilities, I know how lucky this family was that someone there totally got it. I hope that, as this story goes viral, it helps others see that being sensitive to the needs of individuals with autism and other disabilities can go a long way. But something else important happened here: a whole group of people were able to respond appropriately, with empathy and ingenuity, because they'd learned about people with autism. They responded to the person, not the behavior. This is yet another wakeup call for the need to train law officers and emergency responders on interacting with people who have disabilities.

Once again, I'm sitting here aching for a world where people understand our children's behaviors and differences, instead of fearing them. We won't always be around to protect them.

Wednesday, February 6, 2019

A new game that makes speech therapy fun


Speech therapy isn't always fun and games, but speech therapists in Max's life have tried to make it as enjoyable and engaging as possible. Over the years they've played games like Hedbanz and Zingo, used conversation cards, told stories involving fire trucks and other interests he has, used puppets, and tried bubbles and fun whistles. (This Pinterest board has a ton of ideas.) Apps can also make speech therapy exciting. (Here's one list of good ones and here's another.) Now there's a new trend: gamified therapy that utilizes technology.

I just read an article about a really cool game in the works, Amplify, geared towards children with cerebral palsy. It's an adventure game in which children move the story forward using voice therapy exercises. In one scene, patients get into a singing contest with the Phantom of The Opera and have to make an extended "ah" sound. Once they complete the sound, they can move on with the game.

Amplify will use the voice-assisted technology of Google's AIY Voice Kit. The University of Southern California brains who came up with the game are working on a prototype and then they'll trial it.

Tuesday, February 5, 2019

What you wanted to be when you grew up


I only watched bits and pieces of the Super Bowl, but I did manage to catch a bunch of the ads. The Walmart Store Pickup commercial was a fave. My stepfather-in-law and his son were visiting and we all laughed as we shouted out the name of the cars—Batmobile! Knight Rider! Dumb and Dumber! Scobby Doo!—we recognized. It was a clever commercial that made me think about how I used to want to be an advertising copywriter. 

 

Growing up, I thought I'd be a nursery school teacher. I always loved children. I babysat starting in fifth grade and worked as a day camp counselor the summer of sixth grade. My eighth-grade teacher got me into creative writing and advertising, after we did a project on different kinds of ads. In high school, a class taught by the eccentric and outspoken Dr. Zamichow was formative; I discovered that I enjoyed funny essays (I idolized Andy Rooney and Dave Barry), and he encouraged me. Once, when a student griped about not knowing what a "good" essay was, Dr. Z had me stand up and read one I'd written about the rising cost of making phone calls. I still remember how proud that made me feel. Math stumped and frustrated me, but I could write. I won the Creative Writing Award when I graduated.

In college, I temped at a big NYC ad agency during summer and winter breaks. I loved the fast-paced, cool vibe, and thought I'd be a copywriter. Somewhere along the way I decided to go into magazines—I read my mom's Ladies' Home Journal more closely than she did—and I ended up becoming an editor. My first job was at Redbook Magazine (R.I.P.). I've been lucky to work in a field that I adore with a whole lot of smart, fascinating people. Along the way, I've also written for a bunch of magazines and websites and, hello, gave birth to a blog. 

I always knew I wanted to be a mom. I thought it would be fun to have five kids. Or maybe eight! Three turned out to be just right. I couldn't have imagined I'd have a child with disabilities, but then, I couldn't have imagined how amazing he would be—and that he'd enable me to understand that a world with people of all abilities is a very good world.

I'm grateful to have two jobs that I love, although three of my bosses (Max, Sabrina and Ben) can be pretty tough on me. So, what did you want to be when you were growing up?

Photo: Getty/Peter Dazeley

Monday, February 4, 2019

How these parents are building a home for their disabled adult children


Occasionally, the what-will-happen-to-him anxiety flares up, as happened recently when I watched the transit bus arrive for a woman with Down syndrome in our neighborhood. She lives with her elderly mom, and takes the bus to her job daily. I wondered which of her siblings would be there for her when her mom passed. Then I started wondering, once again, where Max might someday live. Once, I found the group home closest to where we lived, parked outside and sat there, as if that could tell me anything.

I was heartened to recently read an NPR piece about a group of parents in Wisconsin who have banded together to build a community for their adult children with disabilities, Home Of Our Own (HOOO). "If we wait for our government and public institutions to provide homes and security for our children, they will never get what they need and deserve," says Susan Wallitsch, an attorney and mom to Frank, 27, who has autism. Like many parents of adult children with disabilities, she faced grim prospects for housing her son. Group homes have a wait list. Seeking funding to set Frank up in an apartment with a caregiver would isolate him. And so, she and a group of fellow parents in the same situation banded together and made things happen. Amazing things.

Frank, center, with his parents Mark and Susan at right and Merissa, a favorite support person, to the left 

Six years in the making, HOOO is not housing complex but an integrated, intentional rental community. "Integration, social interaction and sharing of time and talents is the underlying premise behind this project," says Susan. "The idea is to encourage and facilitate as many planned and natural interactions as possible, so that residents feel like they are truly part of a larger, cohesive community." This integration, she says, will be "an antidote to loneliness and isolation." By integrating different populations, "the quality of life for everybody will be enhanced." 

Phase One of the community in New Glarus, WI, will consist of 40 units—townhome-style independent apartments with one, two and three bedrooms. Ten units will be dedicated to people with autism, cerebral palsy and other disabilities who require substantial support. The other 30 units will be available to working Wisconsin residents who are in need of affordable housing and active seniors, and possibly, Wallitsch says, adults with disabilities in need of less support. Common areas will include a community room with a kitchen for the entire community; a smaller, sensory-adapted community room; walking paths; raised beds for communal gardening; a picnic/grill area; and a shared laundry room.

Rents at SOOO will range from $408 to $1250 a month, with the lowest-priced units subsidized and earmarked for people with disabilities. A local group, Integrity Residential Services, has signed on to provide residential support services. Residents will be able to utilize state-administered Medicaid dollars to hire service providers of their choice. The hope is to break ground for HOOO in the summer of 2020.

The idea for the community was hatched when Susan, attorney friend Mary Anne Oemichen (who also has an adult child with autism), several other parents and a caregiver started meeting at a coffee shop. "All of our families are from local communities and wanted their loved ones to remain in a rural setting close to home," says Susan. "The idea for a complex I think was first suggested by our caregiver, Kim, based on a model she was researching called The Generation House," she continues. "We were all looking at different models from the U.S., France and Scandinavia, and all contributed our ideas until we felt we had a great, workable plan. We also spent time visiting co-housing apartments, group homes and larger facilities such as St. Coletta and Bittersweet Farms."

What followed was many, many hours of project development. Things fell into place when the group succeeded in getting the nonprofit the Wisconsin Housing Preservation Corp to come onboard. It secured an option on a six-acre plot of land, got architectural renderings and contributed $500,000. Southwestern Wisconsin Community Action Program is serving as the umbrella and fiscal agent until HOOO is approved for 501c3 status (as a nonprofit). The cost of the project—$8.5 million—will be largely financed, says Susan, "by federal tax credit financing, utilizing investors who will receive the credits in exchange for their investments." There is $1,00,000 gap between the anticipated costs and what the tax credits will cover. The families are fundraising for another $500,000, and are up to $70,000. 

The group now consists of some15 families, grandparents and Kim, the caregiver. To date, more than two dozen people and families have expressed interest in residency at HOOO. "We have also been contacted by about 50 families nationwide interested in learning more about the project and possibly starting something similar in their community," says Susan. The HOOO's project is replicable across the country, she notes, "because it leverages federal tax credit financing combined with private fundraising to fill the gap, and offers affordable rents."

I asked Susan what advice she'd have for parents of children nearing adulthood who are concerned about their futures, and she generously outlined the planning process that went into creating HOOO. 

• First, meet weekly with a group of dedicated people with diverse skills. Charge modest monthly dues, $5 to $10 dollars per person. You will need money for photocopying, postage, printing and some travel and conference fees. This way one or two families don't get stuck paying for everything. • Really get to know the dreams and needs of the differently abled people represented. 
• Divide up research of existing models and have each person share what they learn about the model, what they like and don't like. Develop a clear and detailed vision as a group that is wonderful for everyone, don't compromise on anything at this point.  
• Find a well established non-profit with experience in housing to act as a fiscal agent and mentor—this was our first really big break.  
• Locate the community you would like to build in and target a parcel of land. Approach the Plan Commission of that community and request a letter of "concept approval." Having identified a good building site and having a letter of concept approval made our project very attractive to our developer.  
• Now you are ready to approach a developer. This is a very specialized area and not something most for-profit developers do. There are specialized developers in every state that work with tax credits.  You will need help in locating these developers to pitch your project. We can help, or if you are working with a great nonprofit, they can help.  
• Tax credits are never enough to complete these projects. The difference between the cost of the project and the potential tax credits is called "the gap." Be prepared to raise substantial funds to help your developer fill "the gap." This is what our $500,000 capital campaign will be used for; there is a "donate" button at the top of the HOOO Facebook page, and contributions are welcome.
• Your developer should gain site control, do a feasibility study and hire architects for initial renditions. 
• Now is a good time to find an organization willing to provide the support the differently abled residents may require. Residents don't have to use this agency, but we are constantly asked who will support the residents and having a firm answer is essential to plan approval and tax credit competitiveness.  
• When you have these things, your developer, architects and you will approach the Plan Commission for actual approval of the project. When approval is granted, your developer will apply for tax credits and you will begin active fundraising for your portion of "the gap." Once tax credits are awarded and "the gap" is covered, you are ready to break ground.  

Yes, it can seem overwhelming to just imagine pulling this all off. Susan knows that all too well. As she says, "We can waste a lot of time complaining about what is not available, or we can get busy and make sure that it is there when our loved ones are ready. Our sons and daughters are the most remarkable people and they show us how to be strong and courageous. We can work together, community by community, to build and sustain homes that are beautiful, safe and bring all kinds of people together."

Architectural rendering: Midwest Modern/Wisconsin Preservation Corp.

Friday, February 1, 2019

Stop on by The Disability Blogger Weekend Link-up


What to do if you're new  

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: So then he opened the car door OMG OMG OMG

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.