Monday, March 19, 2018

Thirteen years of one amazing girl

On Saturday, we celebrated Sabrina's bat mitzvah. It was a beautiful day. Sabrina was so confident and poised at the service she lead—and aced—in the morning. Max did his part opening up the ark. Ben did laps, and afterward the rabbi joked that if anyone ever got lost in the sanctuary they could follow the trail of Cheerios he'd left. 

Sabrina was glowing and giddy-happy during her party at night. We were all giddy-happy, and seriously proud of her. This is the montage I made to celebrate our girl; Sabrina was excited for me to share it.

Friday, March 16, 2018

The Disability Blogger Weekend Link-up: Let's do this thing!

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: On not letting your child with disabilities get away with stuff. Mostly. Sometimes. Kinda sorta. 

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, March 15, 2018

The story of the snowman selfie

After last week's snowstorm, Sabrina made a snowman on our deck. I loved seeing her acting like a giddy kid again, given her cool teen existence.

I noticed, however, that the snowman was missing an appendage: an iPhone attached to his hand. Just like Sabrina, who is on her phone a whole lot. Sometimes when I get concerned this I'll blurt, "You're on your phone all the time!" to which she'll respond "That's not true, it's not all the time!" And technically she's right, she's not on her phone when she showers or sleeps. Nor should I be using trigger phrases like "all the time." One solution we've come up with is that she now charges the phone downstairs while she's doing homework and overnight, so she's not tempted to use it under her covers until 2:00 a.m. Not that I know anyone who'd do that.

While she was taking an afternoon nap, I decided to prank her. I found a branch in our yard that had a wishbone-like end. I attached it to the snowman and positioned her phone on the end of it. Ben seemed extremely puzzled by what I was doing. Max laughed, gleefully.

When Sabrina woke up from her nap, I told her that I'd given her phone to someone else, and that she needed to see who.

She cracked up when she saw it—mom points, earned! She told her friends. And then, of course, she took her phone back. A few days later, the snowman was halfway melted, before I could try facetiming him with Sabrina or doing a Snapchat between them. Sabrina and I joked about him being sad about not having a phone, and it lead to a brief yet interesting discussion about phone usage.

Me: "So, do you think you're on your phone a lot?"

Sabrina: "Yes!"

Me: [pause]

Sabrina: "But I'm not taking selfies to check my appearance."

Me: "Oh, so what are you taking them for?"

Sabrina: "To share them on Snapchat, so my friends can see! I like seeing all of theirs, too."

This was somewhat reassuring to hear. Then she dashed off to do homework. Her phone stayed downstairs, within visible range of the snowman. I was tempted to give it back to him.

Wednesday, March 14, 2018

The students walking out of school to protest gun violence...and those who aren't

Sabrina's school recently sent an email about this morning's walkout by students across America, to protest gun violence. The school wanted all students interested in participating to join in, and reassured parents that the 17-minute walk—to honor the 17 students and adults who were massacred at Marjory Stone Douglas H.S. in Parkland, Florida—would be in a secure location.

I didn't think twice about the fact that Max's school wasn't participating until last night, when Sabrina shared a speech that she and three other students had written, which they would be giving to the rest of their class. She wrote about about the importance of knowing what could be done to help prevent gun violence, so that change could take place and students could stay out of danger. I teared up as I read it, and I felt proud of her for joining in.

I thought of Max. I hadn't seen anything from his school about participating in the walkout. But then, Dave and I hadn't discussed Parkland with Max, or the Las Vegas shooting. And perhaps the school hadn't done the same with its students for the same reason we had.

Max's cognition is coming along. He does have an understanding of what death means. But he does not yet know or understand guns or violence. When Max didn't bring Parkland up—he doesn't watch the news, it's not something he'd discuss with friends—Dave and I made the judgment call not to discuss it with him.

I've read articles about sharing age-appropriate information about school shootings with children. This is on my list of questions to discuss with Max's neurologist, and the school psychologist. It is hard to know what age, developmentally, Max is at. He has a high amount of emotional intelligence, but grasping concepts like guns and people hurting students seem beyond his cognition. We did not want to alarm him. Sabrina has brought it up, and we've had a series of discussions about safety at her school.

Not discussing this with Max has weighed on me: I do not want him growing up in a hothouse. Are we underestimating him? I'm going to see what happens tonight, when we talk with Sabrina about what she did at school today. Perhaps Max will ask questions, and they could lead to some sort of baseline discussion.

I owe it to Max to keep thinking on this.

I owe it to the Parkland 17, too.

Tuesday, March 13, 2018

Is your pause button broken?

"Let's go out to breakfast!" Dave said yesterday. I was off of work, and I'd just dropped Ben off at preschool.

But I had so much to do: Sabrina's bat mitzvah—her coming-of-age service and party—are happening next Saturday. I had a toast to write. I had to go to the bank and get money for tips. I had to put the final touches on the photo montage I made for her, which I've been editing and re-editing obsessively because summing up 13 years of your child's life in pics and video clips is no mean feat. Meanwhile, the house needed help: four out of five with us have had a stomach bug in the last week, and I wanted to Lysol it.  d

My pause button: It is broken. Despite my best intentions, despite the fact that I am fully aware I need to relax more than I do, I am perennially on fast forward. Is this you, too? There are eleventy billion things I have to stay on top of or get ahead of, down to noticing we are almost out of t.p. (and for that, I give myself and all of us props—here.)

Once, I researched and wrote an entire article on this topic. I stuck with the experts'  tactics for a while, then fell back into my decidedly non-lazy ways. The quote I most related to was from Ellen Langer, PhD, a professor of psychology at Harvard U.: "When people assume that if they don't get to their to-dos, their world will fall apart, that needs to be questioned."

It's true. If I fall behind—if I don't pick up all the toy pieces on the basement floor, if I don't get to that extra load of laundry, if I don't find the pair of scissors that has been missing for two weeks, if I don't remember to buy another box of our family's favorite granola bars, if I don't if I don't if I don't— then I might backslide into a point of no return in which chaos will consume my house and my kids will show up at school dressed in their footie pajamas or something like that.

I fear that. And so, there I am at 11:15 at night, emailing teachers and ordering gifts on Prime for parties my children are attending and doing JUST one more thing before I read and get to sleep, and then just one more and then...just one more. And where does this get me? Well, that's the thing: Where it gets me is that our family life does run pretty well, other than the occasional missed doctor checkup and that one time I forgot to pick up Sabrina at lacrosse practice. Everyone has clothes and sneakers that fit them, they are up to date on shots, they are fully stocked up on meds and important snacks and their writing utensils of choice. I attend the parent-teacher conferences. I fill out the camp forms. The groceries get bought. The house gets cleaned.

I feel these bursts of calm when I GSD. Crossing stuff off my to-list is my peace of mind, my salvation, my drug of choice.

But then: me. I'm dead last on my to-do list, unless you count brushing teeth and showering (and I sure hope nobody counts that as me time). As much as I may feel these bursts of resentment that Dave is not the person who notices we are running out of t.p. or knows when forms are due, he is the person who gets me to relax. (Well, other than his habit of watching Mad Money every evening.)

Yes, I have to prepare for next weekend. But there are spinach and Swiss omelettes to be eaten. And that's exactly when I had when Dave coaxed me to take an hour out of life on a Monday morning and we went to a diner and enjoyed.

Monday, March 12, 2018

On not letting your child with disabilities get away with stuff. Mostly. Sometimes. Kinda sorta.

As all parents know, perfection is pretty much impossible when you have children, no matter what Instagram and Pinterest will have you believe. We all have to let go—of our ideas of what a "perfect" child is, a perfect home, a perfect meal, a perfect mother, a perfect dad, a perfect etc. And as many of us also know, parenthood sure doesn't mean your perfectionistic impulses go away. Me, I like to keep things super neat at home. Which is delusional, given that I have two teens, one toddler and one beloved partner whose talents do not include noticing things lying on the floor.

I usually spend a good half hour at night picking up after everyone, Dustbusting and putting stuff away. Because I know how to have a good time! There are two main places I'm especially particular about, because they're the easiest to keep clutter-free and nice looking: our kitchen and our bedroom. The kitchen was redone a couple of years ago and now has lots of storage, complete with places for socking away papers and chargers. Our bedroom is usually toy free and in good shape—I just keep the door closed.

Neatness is my chicken soup for the soul. It gives me the sense that my life is perfectly in control, even during periods when chaos reigns. For a long time after Max was born, and everything felt chaotic, having some sense of order at home was one of the only things that soothed me.

I got somewhat neurotic about keeping our porch swept and having people take their shoes off inside the house once Ben started crawling; I've read one too many articles in recent years about the bacteria, chemicals and dog poop people track into their homes on their shoes. If you're ever driving around suburbia and spot some lady in her bathrobe sweeping the porch at around 9:30 p.m., that's me. 

Max is the only other person in the house who shares my love of order. It thrills me when he puts stop back in its place, both because he cares and because he's picking up stuff—organic occupational therapy for the win. And so, this weekend he grabbed a broom and swept the porch without my asking. Except there was dirty snow on parts of it, which he was smearing all around. I watched him from the front door.

It was awesome to see him using the broom. I wavered about saying something. I'm sometimes guilty of letting Max get away with stuff, because of the challenges he has with grasping and using his hands. I'll too readily pick up something he's dropped instead of letting him do it, pull up his pants for him because I'm in a rush or on occasion, let him dictate his homework responses so I type them instead of him. I know I shouldn't, but I don't always have it in me to push him to do stuff, especially if it's in the evening and I'm wiped out.

Still, I reasoned, if it was Sabrina dirtying up the porch, I would have said something. Why should Max get off easy? Why shouldn't I expect him to sweep perfectly? If he could push the dirty snow one way, he could whoosh it off the porch.

I walked outside. "Hey, Max, the snow got dirty and you need to sweep if off the porch, so it doesn't get the porch dirty," I pointed out.

"I KNOW!" he said, because: teen.

"Here, do you want me to show you?" I asked.

"NO!" he said, because: teen.

So then I motioned how to do it and he just sort of glared of me and went back to smearing the gross snow around the porch.

"BYE!" he said, because: teen.

And at that point, me and my perfectionistic tendencies slunk back inside.

There's nothing wrong—and everything right—about treating Max like I do my other teen. Which means I'm going to get ' with any other teen.

Friday, March 9, 2018

The Disability Blogger Weekend Link-up: Let's click!

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: Raising children with disabilities: Someday, you're going to wish this

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, March 8, 2018

It's hard to let go of that last bit of baby-ness

At Ben's last pediatrician checkup, when he turned 2, I confessed that we were still giving him a bottle and worried about whether we were destining him for braces. It's just one bottle at night, at bedtime. The doctor told me it was fine and to let him have a bottle for as long as he wanted one.

Now, I am assuming he did not mean until Ben left for college, but this is where things are potentially headed. Because Ben still loves his bottle, and I still love giving it to him. It is pretty much the last vestige of baby-ness left, other than his pudgy cheeks and diapers and the way he looks when he sleeps. And I am clinging to it for dear life.

When he was an infant, I'd hold his bottle for him as we sat in the rocker in his room at night. Then he started holding it on his own. And now, he holds it in his hands and zooms around and I just gaze at him, adoringly.

It's funny, I have some not-so-fond memories associated with the bottle, called the Medela Special Needs Feeder. Ben threw up constantly as a baby until we got this bottle for him, which helps reduce air intake. Keeping track of the little yellow discs has been a pain in the butt. We've accidentally thrown out several, and I regularly fish them out of the garbage disposal.

But still: Baby. Bottle.

Ben is the child we waited too long to have, and then miraculously had. After him, I will never again have another baby of my own to take care of.

To be sure, I am savoring his toddler-ness. He's learning new words every day and asserting who he is; last weekend, he walked around proclaiming "I like chocolate!" If you ask him what time it is, he says "8:40!" every single time, with great conviction. His favorite activities are dance parties in Sabrina's room and gleefully hopping up on the chair next to our sink and turning the water faucet on and off.

At night, I heat up hot water, pour the soy milk into a bottle, put the hot water into a cup and drop in the bottle. People say don't let your baby get used to warmed milk, but we did, and I don't mind this bit of pampering at all.

By day, Ben drinks from a toddler sippy cup. Every evening I think, Maybe tonight I should just give him a cup at bedtime instead of a bottle. And then, I heat up a bottle.

Recently, I asked Ben which he prefers. "Bottle!" he declared.

So we're in agreement about this, me and him. He's happy to keep having that bottle. And I am all too happy to keep giving it to him. 

Wednesday, March 7, 2018

Puking is a milestone moment not in the teen development books

"Is that Max?" Dave asked.

It was around 11:00 and we were in the living room. Sure enough, Max was saying something from  upstairs. Dave went first, then yelled for me.

Max had thrown up in his bedroom. He said he felt better.

"Throwing up is disgusting!" he announced, and I agreed.

I ran downstairs to grab some water for him, along with paper towels and cleaning spray.

Dave held the cup to Max's lips as I started swiping the floor. When I stood up,  I noticed a soiled towel lying on top of Max's dresser, along with a few crumbled baby wipes.

"Max, did you try to clean up?" I asked.

"Yes," he said, and I melted. Because even though he's a teen who delights in saying "I hate you!" he's still a sweet boy who wants to help. Also: It's always a thrill when he uses his hands—or does tasks—without prompting. Oh, yes, I am not beyond considering sopping up puke OT.

As I stripped the sheets off Max's bed and put on new ones, I thought back to when he was a little guy. It's always hard to see your kids sick, but Max wasn't able to say or indicate what hurt him or how much, and Dave and I would feel so pained and helpless. And now, here we were, discussing how gross puke was. And he'd tried to clean it himself.

One of the ways I always notice Max's progress is during recurring life events, whether it's our annual trip to the Jersey Shore, holiday meals with family or, yes, when he's sick. In a given situation or setting, I can recall how Max once used to be.

"No school tomorrow," Max announced as he lay down. "I'm sick. I'm staying home all day!" 

Oh, yes: maturity.

Tuesday, March 6, 2018

Raising children with disabilities: Someday, you're going to wish this

I found some videos this weekend of Max, when he was 4. One thing stood out: Max looked great, a cute, bright-eyed, exuberant little boy.

I showed the videos to Dave without saying anything—I wanted to see if he had the same reaction I did. "Wow, Max wasn't as bad as we thought he was," he said, sure enough. "We were so focused on parts of him."

He was so right. And it made me kind of sad.

Back then, we saw a happy, cute boy, for sure. But we also saw everything that wasn't OK—Max's lack of speech, his struggles with retaining food and water when he ate and drank, the stiff hands and fingers unable to grasp stuff—and we were anxiety-ridden about getting him to be OK. I was so worried that he hadn't developed a pincer grasp, and couldn't isolate his pointer finger to press a button. I knew that he still had the asymmetrical tonic neck reflex, a primitive reflex (the one in which it looks like a baby is fencing) that most tots outgrow around six months old; it affected a lot of things, including hand-eye coordination, balance and Max's ability to hold his hands together in front of him and hold a ball.

Oh, yes, I knew everything that was "wrong" with him. From the therapists, from reading up on stuff online obsessively, from the Early Intervention reports and later the school ones. What I didn't yet know or understand: that disability is just one part of who a person is, not the whole—and that it's no tragedy to be disabled. That took years to get and accept. So did the fact that as much as I tried, I didn't have a lot of control over how Max turned out. That desire to make him better was a tremendous source of anxiety, and once I realized that Max was on his own timeline and nobody else's, it released its grip on me.

Max has his challenges; cerebral palsy is for life. But now, when I see him having a hard time picking something up or getting wobbly when he walks down the stairs, I don't worry. This is Max. It's all part of the package. He'll do what he can do. What he can't, he'll figure out a way around or we will, together.

I know this is easy for me to say. Back when I had no idea what the future held for Max, I was scared. I took comfort in knowing we'd found the best team of therapists and specialists we could; connecting with other parents; and taking a whole lot of photos and videos. As he's gotten older, connecting with adults who have disabilities has given me valuable perspective.

Chances are that someday, you will look back at your own pictures and videos and mainly see a beautiful child looking back at you. And you are going to wish you hadn't wasted so much psychic energy worrying and enjoyed more of that kid deliciousness. That child may or may not have turned out the way you thought he would, but no matter what, he will have surprised and amazed you—in part because you, too, will have developed and evolved. And you will be so proud of him.

This is what I would tell my younger mom self.

This is what I'm telling you.

Monday, March 5, 2018

Oscars our family could have won this year

Makeup and Hairstyling

Firemon Max in Jamaica

Live Action Short Film

The first time Max gave his baby brother a bath

Actress in a Supporting Role

Me, holding it together as Max graduated elementary school

Actress in a Leading Role

Sabrina, with her daily morning moan "I HAVE NOTHING TO WEAR!!!!"

Best Documentary

Fireman Max and Firefighter Angelo: A Love Story

Original Song

When Max and friends serenaded Leslie Odom Jr at a benefit performance

Costume Design

That time Max let Ben wear his hat

Actor in a Supporting Role

Dave, accompanying Max to Home Depot to buy appliances for Max's planned move to Jamaica  

Actor in a Leading Role

Ben, "ordering" pizza and French fries

Best Picture

The only one taken all year with us all looking at the camera and smiling

Friday, March 2, 2018

The Disability Blogger Weekend Link-up: Put 'em up

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: That dream about your child where he's standing up for himself

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, March 1, 2018

You never forget the really kind doctors (or the not-so-kind ones)

"You remind me of my wife," the pediatric neurologist told me. "She's always taking notes." We were in a conference room in the NICU a few days after Max was born, and I was furiously scribbling stuff down. Dr. Gold been called in for a consult—he was a longtime doctor at Babies Hospital of Columbia University Medical Center. Dave and I were desperate for guidance. Both the pediatric neurologist on staff, Dr. K, and the resident had told us how rare a bilateral stroke in an infant was. "I found just one case in the medical literature," the resident had said. We so needed hope.

Dave and I were in shock, freaked out and overwhelmed. We hadn't known babies could have strokes. On the day Dr. K told us what had happened to Max, he had somberly gone down the list of the many things Max was at risk for: Max might never walk or talk. Max might be cognitively impaired. Max might have vision and hearing problems. The sweet resident had given us some consolation when he spoke about the plasticity of the brain, and how it had the power to regenerate.

Sitting there talking with Dr. Gold, he acknowledged that nobody could tell us what the future held for Max—the mysteries of the brain were many. He urged us to get him as much therapy as possible, because those early years are critical for development. I'd felt the most powerless and despondent I've ever felt in my life as Max lay in the incubator in the NICU, unconscious. It was heartening to know that there was something we could do. We never did take Max back to see Dr. Gold because we found a wonderful neuro close to our home, but I will never forget his warmth and wise words that day in the NICU. Even his off-handed remark, "You remind me of my wife" was so warm and real and non-clinical, the opposite of everything we'd been dealing with.

I randomly found out the other day that Dr. Gold had died in January. I'd gotten an email that the American Academy of Nursing and 96 other organizations had delivered a letter to Congress calling for a bipartisan national committee on mass shootings. As I scanned the list of groups included, I noticed the Arnold P. Gold Foundation and visited the site. Its mission: "To create the gold standard in healthcare—compassionate, collaborative and scientifically excellent care—to support clinicians throughout their careers, so the humanistic passion that motivates them at the beginning of their education is sustained throughout their practice." That's Dr. Gold in the photo above with patient Christopher Savage in the 1990s.

I know just how much the world needs more docs like Dr. Gold—and a nonprofit like the one he founded—because of how that other neurologist in the NICU had made Dave and me feel. He was knowledgable, but he left us in despair about what the future held for our boy. And then, I encountered a doctor who proved even worse. Max was a little over three months old when I visited an experienced neonatologist who'd come recommended by a friend. This doctor examined him head to toe, noticing Max's muscle tightness. He made a comment about how the only other moms he'd ever met who'd had babies with strokes had been mothers who smoked crack. And then he said, "His future looks ominous." When I started sobbing, he looked surprised and remarked, "Nobody has told you that yet?"

No, nobody had, not even the grim pediatric neurologist. I knew, from my conversations with Dr. Gold, that this doctor could not actually predict his future. Afterward, his social worker held Max as I cried some more, got it together, and informed her that no doctor should ever use that word with any parent, because what good did it do a child if his parents had no hope for him?

Hope is what parents of a baby in trauma so desperately need. It is the medicine that revives our spirits and bolsters our determination. And while of course doctors shouldn't be falsely positive, a little hope goes a long way.

I never went back to that doctor, although I've definitely had if-he-could-see-Max-now pangs. I felt the same about Dr. K; he died several years ago.

I read the obituaries for Dr. Gold. He was only the sixth doctor to hold a license in pediatric neurology. He often asked about his young patients' lives, and made it a point to ask parents how they were doing. He'd started his foundation in 1988. He was 77 years old when he met Max, and he treated patients until he was 88 years old. It's because of his foundation that students at more than 170 medical schools and physician assistant programs now pledge the Hippocratic Oath (you know, the one where they vow "first, do no harm") early on in their education, rather than at graduation, so they have ethical expectations set for them at Day 1. One obit quoted him as saying, "You're only half a physician if you're just good at your craft. Unless it's coupled with patient-centered care and humanism, it's suboptimal care."

I wish I'd let Dr. Gold know about the good he'd done for me and Dave during that dark, dismal time in our lives. I'm grateful, too, for the good his foundation will do for future generations of doctors, along with the children and parents they'll be helping. As many of us know, the best doctors for our children are the ones who offer astute diagnostics, helpful advice and hope.

Photo: René Perez

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