Tuesday, February 28, 2017

The 2017 Oscars fail and people's fixation with flubs

Two days after the wrong Best Picture was mistakenly announced at the 2017 Oscars, my news feed remains filled with articles deconstructing what happened. Like everyone, I was eager to know what had gone wrong. But the more I thought about it, the more uncomfortable I got with the all the attention the mess-up received. Because our collective obsession with so-called imperfection regularly victimizes Max and others with disability.

Dave was snoring away on the couch when Oscargate occurred. In the first few seconds, I thought it was a Jimmy Kimmel prank but as quickly became clear, this was no joke. The gaff would have made major headlines no matter what. But perhaps a lot of us were more vested in the Oscars this season because we needed entertainment as usual, given the political unrest. What happened Sunday night was unprecedented.

Social media pounced, and some reactions were pretty amusing:

(For the record: the montage actually did contain a photo of someone living, as The Washington Post and others reported). 

The hoopla started getting to me as I watched Good Morning America's Lara Spencer interview the cast of Moonlight and question them about what went through their heads when the mistake went down. A few minutes later she finally acknowledged what a beautiful film it is, but the segment was over soon afterward. Next I saw someone interviewing Emma Stone, and again, the discussion centered around the mistake rather than her big-time win. And so on and so on. All anyone could see was what was wrong, not what was right.

Obviously, it was a colossal mistake, made all the more juicy because it happened on live TV. But the attention it's received has been over the top. I keep thinking about that because it ties in to something that I've noticed while raising Max: Often people can only see what they perceive as wrong, not what's right.

If you asked people who don't know Max well to describe him, they would likely identify him as a child with special needs or cerebral palsy. They might note that he has issues speaking. This is true. Yet these are not his defining characteristics—they are just part of who he is. If you ask people at, say, Max's school to describe him, they would likely mention his sunny personality and big smile. If you ask me, I'd say the same and also point out that he's bright, super-social and handsome, too. (Yeah, I'm his mother.)

Over the years, strangers have commented to me and Dave what amazing parents we are—without even knowing us—because we have a child with disabilities. People have nodded sympathetically and stared at me with mournful eyes because of Max. They think that we have an unfortunate situation when the truth is that we love Max not because we're saints but because he is our child and he is an awesome one, at that. We're lucky to have him, just as he's lucky to have us.

No entity or person deserves to be defined by defects, real or perceived. This year's Oscar winners have been overshadowed by that one mistake, and it seems like the 2017 Academy Awards will be mainly remembered for it. I doubt that any cultural self-reflection about our hyper-focus on perfection or lack thereof will ensue. But if you've read this, maybe I've given you new perspective on disability. And maybe as our society's thinking about those with disability continues to evolve, people will view Max and others like him as the fully-formed people that they are. 

Monday, February 27, 2017

It's never too late to sit at the kids' table

One of the hardest things to accept as the parent of a child with special needs is that your child will develop on his or her own timeline, and nobody else's. It took me years to make peace with that. The flip side: Fourteen years into being Max's mom, I still have the joy of celebrating firsts, most recently this weekend when Max sat apart from Dave and me at dinner.

We were at Great Wolf Lodge in the Poconos and having epic fun in the water park. Our friends Adam and Jill ended up being there with their boys, Justin and Matthew. Max and Sabrina ran around the hotel with them late on Friday night playing MagiQuest, a tech live action game involving magic wands. Saturday night, our families had dinner together.

We'd asked for a big table; there was a half hour wait. But when Ben got fussy and Dave asked about other options, the hostess said we could take two adjacent booths. I figured our families would each sit together. When we headed toward our seats Sabrina, Matthew and Justin sat down in one booth and Dave settled Max in next to them.

I sat down in my seat in shock. "Max has never sat apart from us in a restaurant," I said to Jill, calmly, when I really wanted to jump up and down and screech "OH MY GAWD HE IS SITTING WITH THE KIDS." She smiled and I don't remember what she said because my head was spinning.

Max really hasn't ever the kids' table—not when we've gone out with friends, not at family holiday dinners, not even at his own bar mitzvah. He's sat next to Dave, so Dave could help him eat. Of the two of us, Dave has usually been the one to do the job. It started when Max was a baby and I would get anxious about feeding Max and sad, too, that he struggled so much to retain food. Dave wasn't emotional at all about it, and he became the de facto feeder.

These days, Max is perfectly capable of eating on his own if his food is bite-sized or cut up. He does so at school and for meals at home (mostly). But when we go out to eat, he is co-dependent on Dave. Grasping spoons remains challenging, and it's just easier to let Dave do the job. Last weekend, in fact, Dave had point-blank told Max he was no longer going to be feeding him. But Friday night, there was Dave spoon-feeding him mac 'n cheese.

"Max, you said you were going to eat by yourself!" I pointed out.

"Tomorrow!" he told me, as he always does and then inevitably doesn't.

But Max did feed himself breakfast and lunch. And then, there he was, ready to do dinner by himself. Dave and Max went to the buffet and got heaping portions of mac 'n cheese and sweet potato pie. Our waitress gave us a dish cloth to tuck into Max's top since he's on the messy side. Then we left Max, Sabrina, Matthew and Justin to their own devices. I only checked on him once, and snapped some photos to commemorate the occasion.

Ben had eaten earlier, so I pacified him with toys and Cheerios as Dave and I chatted with Adam and Jill and I enjoyed my own helping of sweet potato pie (why they were serving that, who knows, but you do not question it when you come upon delicious marshmallow-laden pie at a buffet). In the back of my head, I was processing what had happened.

It seemed strange not to have Max with us. And yet, I felt this immense sense of relief. There is no other way to describe it. It's not as if I've considered Max a burden; taking care of him is a natural, ordinary part of our lives. It's what you do for your children, no matter what their age: You lend them a hand when they need it. You push them to do be independent, as best you can and as best they can. And sometimes, you are wowed when it happens.

After we were done eating, I helped Max clean up. I never did ask him or Sabrina what went on, because what happens at the kids' table stays at the kids' table. He, Sabrina and the boys zoomed outside the restaurant and they peeked in at us through a nearby window, laughing, and I laughed right back.

Friday, February 24, 2017

The Special Needs Blogger Weekend Link-up awaits you

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: It's not wrong to appreciate the parenthood you never had.

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 23, 2017

Is your heart healthy? Are you sure?

I don't have a whole lot of time to spend on myself lately, but there is one body part I've been thinking a lot about these last few weeks: my heart. That's because I've been working for Woman's Day magazine, women's heart health is a core focus of theirs and February is American Heart Month. Even if you're in your 20s and 30s, this is something you want to be thinking about. 

Woman's Day recently hosted a panel in collaboration with the National Heart, Lung, and Blood Institute on ways we can partner up to help women live stronger and longer. Five leaders representing medical, nonprofit, faith-based, business and research organizations spoke. "Community to me has meant women coming together for one understanding: to take time for ourselves to be healthy," noted Toni Carey, cofounder of the national running club Black Girls RUN! Amen to that.

A graphic storyteller was drawing furiously as the panel took place (check out the video and the Woman's Day post about the panel). And yes, I'd like her job, too!

A few key take-aways from the morning:

• Heart disease may be the number one killer of women but with knowledge, education and care, the majority of it can be prevented.

• Complications during pregnancy can identify you as being at increased risk for future cardiovascular disease. These include gaining excess weight, preeclampsia and gestational diabetes. If you've experienced any of them, be proactive and discuss it with your doctor. In my experience (as in, the three times I've had kids), not once has heart health ever come up—and I had a risk factor with my last pregnancy. 

• Get a partner to help you stay healthy; exercise with a friend, sister or mom, and encourage each other to eat well. Note: If you rope in your husband, he might urge you to eat salad every single time he spots you in the kitchen and question your late-night-sitting-on-the-couch-in-front-of-the-TV cookie consumption. Just saying. 

• Changing your diet may be one of the hardest things to do, but even small tweaks can have big payoffs. Here I am, resisting mindless nibbling on crackers as I type. [Pats self on back.] 

• In older women, shortness of breath, wheezing and coughing may be diagnosed as asthma—but they are signs of heart issues.

Here's a simple risk quiz to take. I hope you don't have any risk factors but if you do, please discuss them with your doctor. I will be. 

Wednesday, February 22, 2017

It's not wrong to appreciate the parenthood you never had

Dave and I were both excited to get outside with Ben this weekend and watch him push around his wheeled toy. I knew this partly had to do with the fact that we are savoring the firsts of our last child. I also knew it partly had to do with what we went through with Max.

"Do you feel like you're making up for Max's past with Ben?" I asked Dave the other night, as we were talking about how cute Ben had looked.

"I'm enjoying Ben's babyhood in a different way than I did the other kids," Dave said, simply. And it was true for me, too.

When Sabrina was little, we very much appreciated the ease of her development. We were floored by the progress she made—toddling, feeding herself, holding blocks, saying words—that did not require endless sessions with physical, occupational and speech therapists. We were enchanted with her cuteness and her feisty personality; her favorite phrase was "NO TISSES!" ("NO KISSES!") But we were simultaneously immersed in Max's delays and challenges. A dark cloud of worry hung over us, never casting a shadow so heavy that it darkened our days but still, it was always there.

And now, Max and Sabrina are almost as tall as I am (OK, that's not so hard, I'm 5'2). Max is doing well for himself, far better than we ever dreamed. And Dave and I are free to enjoy Ben, our hearts and minds no longer clouded with anxiety.

On occasion, I feel a stab of guilt about this. But  then I remind myself that it isn't about Ben being the son we never had. He is his own person, as is Max. We're relishing the first-time parenthood we never had, the one we've grieved for over the years.

The sad bond Dave and I shared has morphed into joint wonder and delight. We exchange smiles when Ben speaks gibberish sentences and zooms around the house. "What did Ben do this morning?" I ask Dave after he does the early shift. "What did Ben do tonight?" Dave asks when he works late. We groan at the gigantic poops and Ben's tendency to hide his shoes in random places and otherwise take comfort in mundane parenting realities.

And so, Dave watched with delight this weekend as Ben flew across the grass with his toy. And I watched Dave watching him. And I felt really happy for us.

Tuesday, February 21, 2017

Someone to walk beside him

Max has a stroller a therapist once gave to him that's for kids with disabilities. He's too big for it, but still loves pushing it around, empty. I've struggled with this as it's not doing his image any favors and yet, it's an activity he loves. This weekend, though, I found new peace with it.

It was an unusually warm winter day on Saturday. For the first time, Ben got to wheel a push-toy around our neighborhood. He was gleeful; I felt the same watching him and excited, too, that he wasn't clipping bits off the furniture.

Max decided to join us. I got his stroller out of the garage and he and Ben did laps together. Max kept smiling down at Ben, laughing when Ben made some happy noise and saying "No, Ben!" when he bent down to pick up dirt or tree branches. Occasionally, Ben would smile up at him adoringly. Sabrina came out and rode next to us on her bike for a bit.

I flashed back to when Max was little. At two and a half, he had just started taking independent steps. He used a walker that had wheels and he'd cruise up and down our street like a speed demon. Dave and I joked about renting it out to other kids, since they thought it was cool. And now here was Max, strolling so confidently and contentedly next to Ben. I had one of those he's-come-a-long-way moments.

And as I watched my boys, each enjoying his own sets of wheels, I had an equally reassuring he-is-who-he-is moment.

By the next day, Max was giving Ben rides.

Friday, February 17, 2017

The Special Needs Blogger Weekend Link-up has returned

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: Dear world: It isn't that hard to include my child 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. 

Thursday, February 16, 2017

Dear world: It isn't that hard to include my child with special needs

Last fall, the temple we belong to started a recreational youth program. I signed up Sabrina. I emailed about Max, unsure what kind of answer I'd receive.

You can never, ever just sign up your child with special needs for a so-called typical youth program. First, you have to pave the way. Sometimes, you have to nudge people past the obstacles in their minds. Sometimes, you try and bulldoze your way in only to find the roadblocks are insurmountable.

I'm used to this. It doesn't bother me; it comes with the territory of being Max's mom, head cheerleader, chief publicist and professional bulldozer.

And so, I emailed the program director, Avi:

"I have a son who'll be 14 who has special needs. He is honestly one of the most charming/sociable/friendly kids you will ever meet. I've been wondering about including him and would love to discuss with you."

We had a talk. I explained that at times, Max might need a hand–with opening food items, making himself understood, with toileting. Avi seemed remarkably chill about it, which surprised me. That, I wasn't used to.

There weren't lots and lots of questions about what Max could and couldn't do.

There wasn't any mention of not being "equipped" to handle someone with extra needs.

There wasn't any "Well, I'd like to help but I'm not sure" hemming and hawing.

There wasn't "Let me think about this and I'll get back to you."

There was just, "Sure, let him come!"

An open mind. Including children and teens with disabilities in activities and programs and basically anywhere starts with that. It's what I so joyfully encountered last year when I approached the director of a local dance school about getting Max tap lessons, and she was all "I'm happy to help in any possible way." And boy, has he been loving his tap lessons.

Sabrina went to one event with the group, and we didn't get around to another until last weekend, movie night. Sabrina decided to go. Max wanted to as well. We didn't know which movie was playing, although I took great delight in telling Sabrina it was "The Little Mermaid" because she's 12 and cooler than cool.

I warned Max about not eating popcorn, as it's a choking hazard. He knows to avoid nuts, since he's allergic. When we got there, Sabrina and her friends ran to the youth room upstairs and I helped Max in the bathroom. Avi came out just as Max and I were about to get onto the elevator and we said hello.

I left my cell phone number, in case he had any questions or Max wanted to leave early.

Meanwhile, Max headed over to the staircase.

"He might need help with the stairs if he uses them," I said.

"No!" said Max, who proceeded to carefully walk up a flight of stairs. Because of course, one of the great joys of being a teen is proving your mother wrong.

There were three kids hanging out in the room. I told Max to introduce himself, and he did and then they did. No biggie.

Outside the room, Sabrina and her friends had found a giant ball and were kicking it around. Max joined in. I stood there and watched, then tore myself away and headed out, still not believing it had been that easy.

At home, I walked by Max and Sabrina's empty rooms and I felt amazed that they were both out at the same program.

Another mom was driving them home. I texted her to say "Max just needs a helping hand getting into cars—OK?" And Stephanie responded, "Of course."

No. Big. Deal.

Both Max and Sabrina arrived home happy and excited. They'd watched Mean Girls. Max had some apple juice. I emailed Avi to thank him. "He adds so much to our group with his charm and excitement," Avi noted. "I wanted to thank you for encouraging him to come."

It was the first time in all of Max's years that anyone had ever thanked me for bringing him to a program. And he couldn't have been more right. Children and teens with special needs don't just benefit from inclusion—the other participants do, too. It expands their minds, their hearts and their world to see that heir peers with disability are just like them in many ways, and fun to hang with.

I'm not saying that inclusion is always a simple thing. People running programs have to be comfortable with participants' medical needs. Avi didn't seem fazed that Max has had seizures, and that a call to 911 would be required if one occurred. Also, our children can demand attention and assistance that places may or may not be willing to offer due to lack of resources. Max sitting on a sofa watching a movie is one thing, but if the group does a physical activity like ice-skating he would require a person by his side on the ice as he used a walker.

Years ago when Sabrina belonged to a gym, they had the occasional Parents Night Out staffed by college-age girls; I'd tell the coordinator in advance if Max was coming, and she'd have an extra staffer on hand. The gym we belong to also used to let Max come on Parents Night Out. Then one day we got a call from the director that he was no longer welcome because they didn't have the right "support" for his needs. They closed the door in our faces without offering us a chance to discuss how we might be able to make it work.

Like I said: open mind. 

See also: 8 ways to include kids with special needs in programs, events, classes, camps, wherever

Wednesday, February 15, 2017

Top 10 things to know about cerebral palsy: the video

What I most wish people knew about cerebral palsy: that people who have it also have plenty of abilities. Every person has strengths and talents, including those with CP. One of Zach Anner's superpowers: his sense of humor, as the comedian, book author and TV personality proves yet again in a video he created with The Cerebral Palsy Foundation (CPF) to promote the show Speechless. (Also: his biceps, as he notes.) CPF posted the video on Facebook last week, and it's gone viral.


Tuesday, February 14, 2017

Adorable stuff about our children: What's on your swoon list?

The other day, my friend Cindy asked what Ben is up to that's especially cute. Oh, just a million things: The way he toddles when he walks, says "goguh" for yogurt, sleeps with his butt in the air and his ankles crossed, sticks a finger in his mouth and stares up at his, pokes at our belly buttons, giggles when we make funny sounds, does laps around the kitchen counter with a cup of Cheerios in hand, concentrates when he's exploring a toy, snuggles on my shoulder....

There are a million cute things about Sabrina, too, who at 12 years old is still my baby: the spray of freckles on her nose and cheeks, the looks she makes when she poses for selfies, the victory dance she does when she aces a test, the way she runs on the lacrosse field and puckers her lips when she'd like a kiss and trusts that I'll know every answer to the trivia quiz on her app and sleeps in pigtails and....

Max, of course, is my oldest baby. Thinking about his cuteness has sustained me during times when I've been anxious about his development. He's never been the least bit cuteness impaired. When Max was little, I'd literally make lists of cute stuff about him so when I worried about his future I could whip out a piece of paper that detailed his deliciousness and force myself to focus on his present. It definitely helped alleviate stress. 

In honor of Valentine's Day, here are 14 things on my Max swoon list:

The smile that lights up his entire face when he's doing homework and gets the answer right.

When he comes home from school and asks me, "How are you?" and he means it. Or when he asks "Are you tired?" or "Are you sad?" and he really wants to know. This boy's emotional IQ is through the roof.

His index finger. Yum.

When I'm cleaning off the kitchen table after dinner and I watch Max—without my asking— carefully pick up the bottle of hot sauce or ketchup, hold onto it with all his might, carry it to the kitchen counter, put it down, open the spice cabinet or fridge, pick it up again and put it in. Obviously, he's just doing an ordinary task in his own way, but I appreciate all the effort that goes into it; grasping does not come easy to him.

When we're driving and Max informs us, "Wrong way!" then proceeds to tell us which way to go. (He's often right.)

When Dave and I are having an argument about something and Max says "OMG!"

 When he juts out his bottom lip when he's bummed. It's not that I like seeing him sad—it's just so cute, and he's been doing it since he was a tot.

When you tell him something and he says "I KNOW!"

When his hair is getting all mop-toppy and needs a cut

The way he informs everyone he meets that he is going to Disney World in March, from neighbors to the lady at the dry-cleaning counter

♥ When I introduce him as Max and he says "No!" and then I correct myself and say "Fireman Max"

♥ When Max follows Ben around the house and looks after him

♥ When I lose my phone in the house yet again and he trots off, finds it and hands it back to me, smirk on his face

When I call home or arrive at our door and he says, "Hi, Mommy!" They're words I wasn't sure I'd ever hear, and they always bliss me out.

So, what's on your swoon list?

Monday, February 13, 2017

He got to go to a prom: Thank you, Night to Shine

This weekend, Max went to his first prom: Night to Shine, sponsored by the Tim Tebow Foundation. He was in good company—75,000 guests attended proms held in 50 states and 11 countries, staffed by 150,000 volunteers and hosted by 375 churches. Max had the most amazing time.

At the catering hall that held our three-hour event, hosted by Liquid Church, I spotted everyone from teens to adults who looked to be in their sixties. Some were decked out in suits and evening gowns; Max went with street-cool style. Each guest got a designated buddy, which is a good thing because who wants to be at a prom with their mom? "GO!" Max commanded me after we arrived, and off he went with a lovely woman named Laurie.

Parents had their own space downstairs, complete with dinner. I ended up hanging out upstairs, because I loved the buzz and wanted to see what was going on. I just made sure Max didn't spot me.

Former NFL quarterback Tim Tebow was inspired to start Night to Shine not because of his own prom experiences—he was homeschooled—but because of a visit as a teen to the Philippines, where he met a boy who was shut out of the event because he was disabled. In its first year, 2015, the Tim Tebow Foundation sponsored 44 proms in 26 states, as well as two in Uganda and Kenya. Last year, the group started one in Haiti, a country were people believe those with special needs are cursed. Tebow has said he aims to "change the narrative."

Makeup artists did up some of the young women. Then prom-goers walked a red carpet into the ballroom and had their photos taken. They enjoyed a catered dinner, took limo rides and met up with Star Wars characters. Oh, and they danced. Lots. Max started showing off his moves just as soon as he arrived.

The volunteers were wonderful. I watched as one woman sat with her date at a table filled with fidgets outside the main ballroom. It was loud, and perhaps the noise had gotten to be too much for him. When he decided to sit on the floor and play, she sat down next to him.

At the end of the night, every participant was crowned king or queen. We weren't there for it. An hour before the evening ended, Max got tired (he usually goes to sleep around 8:00) and Laurie texted me that he wanted to go. On our way out, though, he decided he needed one more limo ride. Oh, and could he drive the limo please?

Scrolling through comments and photos on the Tim Tebow Foundation Facebook page and ones readers left on the Love That Max page, you could see what a big, happy deal this was for attendees. There were even two marriage proposals at the Night to Shine in New Hampshire.

In the weeks leading up to the event, I'd wondered if I might have any twinges of sadness that Max wasn't with a date at a typical prom. But as I looked around at all the people enjoying themselves that night, and as Max and I walked to the car and he asked if he could come back next year, all I felt was happiness and gratitude.

Friday, February 10, 2017

The Special Needs Blogger Weekend Link-up: the time is now

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: Hey, special needs parents: Let's school Betsy DeVos

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 9, 2017

That time my baby brother came to my basketball game

This guest post is by Sabrina. I only had to pay her $5. 

One of the best advantages of having a baby brother is that you get all the attention. I've been begging my mom to take him to a game and it happened yesterday! During the basketball game, a lot of people on my team kept giving me compliments about how cute he was. I was very flattered. He really is cute. I kiss him a lot every day.

Ben was making cute noises that sounded like "aaaaaaaaah!" Every time it was quiet in the gym, Ben was having his own conversation.

I was a little nervous because if you know my mom she takes videos of everything and it's a little embarrassing, but at the end I made a shot.

The thing that I was most excited for was after the game because then I could show the baby to everyone. Of course I wasn't shoving him in their faces, I was just walking around with him, but when he started making adorable noises I had to show people. I have been waiting for my mom to bring Ben, so I was really happy.

Daddy says Ben will be a football player because he's wide and knocks stuff down. I think he will be a basketball player because he is always chasing after something, like his toys.

I really love having Ben as my brother. Whether he's crying or laughing he always makes my day a whole lot better. Just the look of him makes me want to smoosh him up.

Wednesday, February 8, 2017

Hey, special needs parents: Let's school Betsy DeVos

Hell hath no fury like a special needs parent scorned. But as mad, sad, disheartened and frustrated as you may feel about the appointment of Betsy DeVos as education secretary, as worried as you may be about the future of your child's education, your voice still matters—now, more than ever.  

So, yeah, she doesn't have experience working in public education. And she doesn't seem to have a handle on the Individuals with Disabilities Education Act (IDEA), the federal law that ensures students with a disability are provided with a free and appropriate public education in the least restrictive environment. Before the law came along in 1975, states did not have a good record of making education accessible to students with disabilities. At her confirmation hearing, DeVos said that enforcing IDEA is "a matter best left to the states."

But wringing our hands isn't going to do anything for our kids, as we well know by now.

What we can do: school Betsy DeVos on how important IDEA is to students with special needs. We can let her know just how much our children have benefitted from the education they've received. We can tell her about the battles big and small that we have fought, even with the law on our side, to get our children what they need and deserve. We can tell her all about our children's potential and the amazing feats of learning they have achieved like my boy Max, who had brain damage so severe at birth doctors said we could sign a Do Not Resuscitate and who is now reading thanks to his teachers' attention and nurturing.

Oh, yes: We can make sure she knows. 

• Tweet at @BetsyDeVos with the hashtag #EducateDevos
• Email her at betsy.devos@ed.gov or at contact@betsydevos.com
• Call her family foundation at 616-643-4700. Or message her via this contact form
• Leave a comment on DeVos's Facebook page.
• Email the US Department of Education's headquarters (well, assuming it doesn't get abolished) and specify that you want your comments added to the common database. Messages are forwarded to senior officials in the department. Email answers@ed.gov — or call 800-872-5327, press 3 and speak with a representative.

One good morale booster: Consider a donation to DonorsChoose.org, where you can help fund a classroom project in a high-need community.

Also! You can make plans right this second to not vote for the following senators, up for reelection in 2018, who ignored many constituents and voted for DeVos:
Arizona: Jeff Flake
Mississippi: Roger Wicker
Nebraska: Deb Fischer
Nevada: Dean Heller
Tennessee: Bob Corker
Texas: Ted Cruz
Utah: Orrin Hatch
Wyoming: John Barrasso

Deep breaths. Now, GO!

Tuesday, February 7, 2017

How do you get yourself out of those anxiety black holes?

I lost it over a door handle the other evening. Sabrina had a few friends visiting this weekend and somehow, they broke the lever to the basement door. First I couldn't remove it. Then I realized part of it was warped. I hammered it out, but another part stumped me.

The baby is all over the place, so we need a basement door that locks. Also: It. Was. One. More. Thing. To. Deal. With.


Poor Max did not want any part of it. He opened the front door and went onto the porch. Dave tried to calm me but I was determined to fix the damn door handle. (I'm more handy than Dave is, which he'll be the first to admit.) After I spent an hour trying to install two teeny tiny screw with an Allen wrench, though, I had to admit defeat.

Dave thought I was being completely irrational, and he was right. Still, my reaction wasn't really about the door handle. Is it ever really about that one thing? I went off the deep end because I've been anxious about deciding on a high school for Max. The process has not been smooth. Although I've tried to find an inclusive program, it doesn't seem to be working out. (More on that another time.) The concern I feel about the big changes happening in our country are also feeding into my stress.

Sometimes, my anxiety about Max has a way of seeping into other parts of my life. A couple of weeks ago, I pretty much convinced myself that our home's foundation was sinking. First I spotted a gigantic crack on baseboard molding in the living room. Then I started noticing other cracks—by a window on the second floor, on baseboard molding in our bedroom. Oh, and the attic door was no longer closing. This was all on our home's right side; it's the addition part of our house, which dates back to 1922. We'd had construction done in the kitchen before the baby was born—could that have set the house askew?!

When I shared my house foundation freakout in a local Facebook group, most people noted the cracks were probably due to contraction of wood from the winter cold. Still, why were they all on one side of the house? Would we end up living like some people in a childhood rhyme, one side of the house up, one side of the house down?! I've wandered around the house peering intensely at cracks, likely convincing Dave I am even more far gone than he suspected.

I had to admit, the anxiety I've been carrying around has caused cracks in my foundation.

Taking Ben for long walks in his stroller and talking with friends helps. So does taking action steps. I have a contractor coming in Thursday to eyeball stuff. I've called senators to oppose Betsy DeVos, and I've been figuring out what I can do for Max. He goes to an inclusionary camp during the summer. I'm going to see if I can find another activity in our area that's inclusive. Or maybe I can pair Max up with a peer his age to help encourage friendship. Or...I don't know. Yet.

Ironically, the other thing that helps me cope with anxiety is—wait for it—doing home repairs. Getting into the zone of fixing broken stuff is a good distraction. It's satisfying when there is stuff in Max's life and stuff in the world at large that I cannot fix.

Dave got a new door lever from Home Depot and I easily installed it. Turns out I had accidentally removed two screws that weren't supposed to be removed.

How do you handle those times when anxiety gets the best of you?

Monday, February 6, 2017

Let's talk about the diversity nobody's talking about

I was half-watching the SuperBowl last night (until the end—that end!) but caught Airbnb's "We Accept" ad. It flashed faces of different ethnicities as these words popped up:

We believe
no matter 
who you are
where you're from
who you love
or who you worship
we all belong.
The world is 
more beautiful
the more you 

It's a timely message for the world, in light of the immigration ban. It's timely for me, too, because I am constantly trying to help people understand that Max belongs, and to encourage acceptance. And I wished that a person with disability had been included. Sure, you could argue that's not the point of an ad like this, given what's happening out there. But I'd argue that including people with disability in ads is always timely, and necessary, especially when one is making a plea for diversity.

Embracing diversity means accepting religions other than yours and skin of all colors. That, people know. Embracing diversity also means accepting people of all abilities. That, people often don't think about, in my experience. While I hope that parents are having conversations about their children about accepting those with disability, I'm not so sure. Over the years, I've found that kids and adults can get uncomfortable around Max, and don't know how to behave or make conversation. I am glad to pave the way; I just wish it weren't such an uphill effort.

"Yes, he talks, in his own way," I'll respond as Max is standing right there.
"He understands you—ask him how old he is!"
[In my head] Would you quit staring at him?
"Yes, people with cerebral palsy can walk. CP affects everyone differently."
[In my head] Please don't make it like my son is a tragedy. 
"You can just say 'hi!'"

I mean, it's not like including a person with disability in a Super Bowl ad about diversity would change everything. As if. But it would be one step in the right direction. This recent article on Forbes.com by a professor of marketing noted that diversity is "the new norm" in Super Bowl ads. But I don't think there was one person with disability in any of this year's Super Bowl commercials. Last year, there was a girl with Down syndrome in a Super Bowl ad for SunTrust bank (at second 38); another little girl with DS appeared in a 2015 McDonald's ad that aired during the Super Bowl (at 52 seconds). These do not exactly a trend make.

It's more important than ever to accept different ethnicities and religions. There's no question about that.

And it's just as important to this mother today, as it was yesterday and as it will be tomorrow, for people to accept those like my son.

Friday, February 3, 2017

The Special Needs Blogger Weekend Link-up: It's time

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: When your child wants to discuss his differences

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 2, 2017

When your child wants to discuss his differences

Max and I were looking at a drawing he had made during an activity. Some of the magic marker was smeared.

"Drool," Max noted, matter-of-factly. 

Max drools because of the cerebral palsy. It's no secret. If you know him, you know it's part of who he is. (It affects about one third of people with CP.) He doesn't sense saliva gathering in his mouth, and doesn't swallow accordingly. Years ago, his physiatrist gave him a Botox injection in his salivary glands. It's supposed to reduce production of saliva, but it did nothing. (I keep meaning to find an investor for my Mommy and Me Botox Clinic idea.) I've also tried to take Max to oral-motor training sessions, but he hated them.

Our solution: thick, cotton bandanas and repeatedly saying "Wipe your mouth, Max!" On occasion, he'll grab his bandanna and dab. When we're around others, Dave or I draw our hands across our own mouths as a signal for him to do it.

There's a procedure involving reversing the salivary glands that's effective, but it seems like a drastic measure to take given that the situation doesn't affect him medically. We have considered scopolamine; it's the patch used for sea sickness, worn behind one ear, and it is effective for drying up saliva. His awesome neurologist said we might want to consider it, as the drooling can make him stand out from his peers. But I don't particularly want to put him on any additional medication, and the drool hasn't bothered him...yet.

"Max, maybe one day you'll start noticing when you drool," I mused out loud.

"I don't know," he said. 

And then, he had some questions. 

"Did you drool when you were little?" he asked.


"Did Daddy drool when he was little?"


"Did Sabrina drool when she was little?"


"Did I drool when I was little?"


"Oh!" said Max. Then he walked away. I was all set to talk about it, and get into a bigger conversation about people having unique differences, but he was done.

The guidebook is all in my head. There is no "How to discuss drooling" section in the child development books. I wish there were.

Max's awareness is growing, so that's good. But it means he is also becoming more aware of his differences. It will be up to me and Dave to keep discussing what he wants to, and to remedy the drooling if he so desires. Meanwhile, we'll just keep telling him what a smart, handsome guy he is.  

To be continued.

Wednesday, February 1, 2017

7 things one cute picture does and doesn't tell you

• I didn't purposefully match them, but now I think I have to do this more often.

• Max doesn't just dote on his brother, he has taken it upon himself to be his disciplinarian: He says "No, Benjamin!" when Ben sticks his fingers where the door hinges are or throws his food off the highchair tray.

• He gets so excited to show Ben how to play with toys. This weekend, he demonstrated how to stack rings (the ones on the shelf behind them).

• Ben continues to refer to Max and everything else as "Dis!" His second word: "Goguh." ("Yogurt.")

• That object in Ben's hands is the Apple TV remote. It is his favorite thing in the whole wide world. In the mornings, Max uses the remote to watch Disney World videos on YouTube. When Ben toddles over to grab it, Max holds it above his head so it's out of reach, and each time I am psyched to see him raising his arm that high. Baby brother therapy, for the win!

• It is rare to have a sighting of Ben with two socks on his feet. That is because he usually holds one in his hand and nibbles on it.

• I have wondered if Ben's development might bring me back to that painful time in Max's life, when the wasn'ts were all I could see: He wasn't walking, he wasn't babbling, he wasn't holding toys. Instead, what I see is Max's progress.

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