Friday, March 30, 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: The uphill battles you fight for your child, and feeling all the feels

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 29, 2018

The uphill battles you fight for your child, and feeling all the feels

I had one of those days yesterday when having to advocate for Max weighed heavily on me. It's not that I don't have to push for stuff for Sabrina, but Max has some specific needs which lead to certain situations. In this instance, I didn't even do anything—the mere thought of having to deal with yet another issue put me off.

Max was really tired; he'd gone to a school event the night before. He trudged off to the bus at the usual time of 7:25 a.m. And I was all, I have had it with the pickup time. It's not that it's so early in the morning, it's that Max is on the bus for an hour and twenty minutes for a school that is 5.5 miles away from our house. The trip takes me 12 minutes without traffic, maybe 20 to 30 minutes during rush hour. And of course, there are other students on the bus—but anything more than an hour commute for him is ridiculous. Max used to go to a school that was double the distance away, and his ride was 25 minutes shorter.

Getting Max to sleep earlier is not an option. Most nights, he already crashes at 6:15 or 6:30—his muscles work really, really hard during the day, and he is pretty wiped out come evening.

When I raised the issue earlier in the year with the bus company and our transportation coordinator, I was told nothing could be done. Unlike me, I let it slide. And now, the situation was rearing its head.

On the positive side, the bus company—it's transported Max for years now—and the drivers are dependable. I've read horror stories over the years. He is first to get dropped off in the afternoon, which works out nicely for therapies. Still, that does not even things out. Max has cerebral palsy. Siting immobile on a bus for an extra 20 to 30 minutes a day is not ideal for his muscles, which are on the stiff side. Max is also not a boy who can whip out a book and read it during a bus ride, have extended conversation with other students or do homework independently on his iPad. (And if said iPad was in his hands instead of in his backpack, he'd end up watching fire truck videos and he does not need any more screen time, trust me on that one.)

Eager for perspective, I posted on Facebook to ask if other parents had dealt with excessively long bus trips. Then I emailed one of Max's doctors and asked him to write a letter about the situation. I also started composing one of my own for our school district (Max is bussed to an out-of-district school), all during my train commute to work. When I checked Facebook, there was an explosion of comments.

As is always the case, I got great feedback from the hivemind, and the comfort of knowing I wasn't alone. A couple of parents suggested raising this at the IEP, and having a bus trip timeframe added. I could note that even for a mainstream kid, that amount of time on the bus was excessive. I could also bring up the medical concerns, like being on a bus for an extended period of time and not having someone who could administer the emergency injection in case of seizure.

Sometimes, though, there's also discomfort in numbers, especially hearing that this happened to numerous other students with disabilities—and in even worse ways. One mom drove her child 70 miles to school each way, an hour and 15 minutes daily; otherwise, she said, it would be a 2.5-hour bus ride each way, because it would involve picking up a student who did not live nearby. One mom noted that in addition to her child spending a whopping 150 minutes on the bus daily, this kid was being pulled out of school early—which other parents promptly noted was illegal.

I spoke with Max last night. I tried not to lead him; I asked if he liked his bus ride. Unprompted, he said it was too long. And now I know what I have to do, and I have good ammo—I am certain this will be yet another uphill battle.

I will do anything humanly possible to make life right for Max. I am his protector, his defender, his advocate, his path paver, his obstacle buster, his guardian angel. I may occasionally feel emotionally weary about always having to push to make things happen, but I never run out of steam. That's not an option.

Once again, though, I'm left wondering why it has to be so hard. 

Wednesday, March 28, 2018

Disability emoji: It's about time

There's an emoji for nearly everything on our phones...except ones representing disabilities. Apple's hoping to change that: The company issued a proposal this month requesting the addition of nine types of emoji inclusive of individuals with disabilities. As it noted, "Diversifying the options available helps fill a significant gap and provides a more inclusive experience for all."

The plans have been submitted to the powers-that-be that standardize emjoi, aka the Unicode Consortium. The proposed emoji include:

A person with a cane
A person in a mechanized wheelchair (male and female)
A person in a manual wheelchair (male and female)
A deaf sign
An ear with a hearing aid
A mechanical arm/prosthetic arm
A mechanical leg/prosthetic leg
A guide dog with harness
A service dog with vest and leash

Obviously, this is a Really Good Thing, although you wonder why it took Apple or anyone this long. Two years ago, the British disability advocacy group Scope created 18 emojis depicting people with a range of abilities, which they made available to the public for downloads. 

Apple worked with the American Council of the Blind, the Cerebral Palsy Foundation and the National Association of the Deaf to come up with the emoji, hopefully consulting with people with disability as part of the process. The images are prototypes—there will be a variety of skin tones. 

Apple noted that this isn't meant to be a comprehensive list of all depictions of disabilities—it's a starting point. As the mother of a child with cerebral palsy, I'd like to see a person with orthotics represented. It would also be awesome to see someone using a communication device.

Illustrations: Apple

Tuesday, March 27, 2018

He just wants to be alone

It still happens: Every so often, I have one of those "Look how far he's come!" moments. It happened this weekend.

Max likes to chill by watching videos of fire trucks on YouTube—typically, Chicago or New York. Usually, he hangs on our living room couch. But as I was playing with Ben, Max asked if it was OK for him to go upstairs and watch. This was a first.

"Sure!" I said.

So he grabbed his iPad and went upstairs, and I went back to building towers of blocks with Ben.

This seemingly small occurrence is something I only dreamed of when Max was a tot. Back then, we couldn't leave him alone to play, because he needed help grasping stuff and he also didn't have it in him to entertain himself. Being the mom of a little kid can be pretty nonstop, but being the mom of a little who wasn't progressing to playing on his own felt consuming. It wasn't just the endless amount of floor time—it was the undercurrent of anxiety that ran through it all. Would he ever progress to the point where he could play on his own? 

Yes, he would, at around age six. I could leave him and Sabrina together, and they would occupy themselves. Slowly but surely, he also got into imaginative play—that, too, came in on Max's timeframe. Once, I walked in to see him playing doctor and checking out Sabrina's heart.

About an hour later, I went upstairs to see what was going on. Max wasn't in his room—he was sitting, cross-legged, on our bed. A teenager hiding away from the world and chillaxing, just like I'd done at his age.

Maybe these wow moments will never stop. That would be a great thing, because it would mean that Max will continue to progress throughout his life. I have a feeling that will be true.

Monday, March 26, 2018

Are you as good of a parent as yours were?

I'm pretty sure I'd never bring home an accordion for my kids.

That thought ran through my head as Sabrina and I watched a tango performance this weekend. Her violin teacher was playing, and had invited us. There was also a cellist, a pianist and a guy playing an accordion. I thought back to my own childhood, when my dad walked in from work one day carrying a giant black case. Inside lay an accordion. He thought me or my sister might like learn to play it. 

To this day, I have no idea why Dad thought we'd be into the accordion. We never did take lessons, but every once in a while we'd fiddle around with it. That was just like my dad: He enjoyed introducing us to new things. 

As I sat there listening to the beautiful music and watching the dancers, I considered whether I do as much for my children as he'd done for me. I wasn't totally sure.

Puppet shows, ballets, road trips, summers spent in the country to escape the heat of New York: these were all a part of my childhood. Whatever interested me—calligraphy, sewing, collecting old coins—my dad encouraged. When I decided I wanted to play piano, he got me one. He and my mom were always game to watch my sister and me perform in made-up plays. They indulged my love for reading and let me bring books to the dinner table. (Gasp.)

I do my best to encourage my children's interests, whether that's involved traipsing to fire stations with Max or taking Sabrina to lacrosse games. She and I occasionally go to dance or music performances. A few months ago, I took her to see the movie An American in Paris, set to an orchestra, and she loved it (aaaaand Gene Kelly's wife was there to do the introduction, whoa). Dave and I go to the movies with Max, his entertainment medium of choice. We take our kids on trips as often as we can. We sing "Daddy Finger" and "Mommy Finger" and all the finger songs to Ben, his favorites, and DO NOT look them up on YouTube or you, too, will not be able to get them out of your head. You've been warned.

Maybe I felt that stab of guilt because lately, we've been hanging out at home a whole lot. Entire weekends spent watching TV, playing, snacking, watching more TV and chilling. (Not to mention: getting on each others' nerves.) I have literally wondered if I've been wasting my kids' lives away.

Then again, I have no memories of those weekends I spent growing up watching TV and not doing a whole lot of anything—unlike, say, that time Dad took us to dance with Native Americans at a reservation or when we holed up in a rustic cabin in Vermont one summer vacation. I guess experiences are what children most remember when they grow up, along with the comfort of knowing that they were encouraged to be themselves, loved and adored.

Maybe I'm not filling up the kids' calendars every single weekend, maybe I'm not that parent who'd bring home an accordion or a tuba or a recorder in the hopes of sparking someone's interest, but then, I'm not my dad. Our parenting is as unique as our children themselves. I think he'd be proud of me.

All this was swirling through my head as I watched the dancers dancing. I thought of how my dad would have approved of us being there. And then, finally, I tuned in and enjoyed.

Friday, March 23, 2018

The Disability Blogger Weekend Link-up: post it

What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Cerebral Palsy Awareness Month and stuff I'm still not aware of

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 22, 2018

How one mom is preventing sick children from losing their doctors: The story of Gracie's Bill

This post is by Colorado mom and advocate Susan Osborn Hoyt, a mom of two with a third on the way. She writes Amazing Gracie, a blog about her family and parenting a child with a rare disease, where this post originally appeared. Her daughter, Gracie, has a rare disease called Posterior Column Ataxia with Retinitis Pigmentosa, which means she has ataxia (poor balance), is legally blind and cannot feel pain. When Gracie lost her amazing rare-disease doctor, due to legal technicalities, Susan set out to ensure this wouldn't happen to other kids in their state. Susan works full-time for a legal publisher, and moonlights at her husband's business. She is yet more proof that sometimes, it takes just one determined parent to change the lives of many children. 

It seems that the time between my posts gets longer and longer. There is a good reason for that. In addition to being a pregnant mom and working two jobs, I have a few side projects going on. One of them is a piece of legislation affectionately known as Gracie’s Bill.

A few years ago, we lost Gracie’s best doctor when she left our hospital and went to another hospital in the area. I received a form letter from our hospital the day she left to inform us that she was no longer with the hospital. A few weeks later, that doctor, Dr. D., called me on my cell phone to let me know that she was bound by a non-compete agreement and was unable to see any pediatric patients—including Gracie—for two years. She wasn’t even supposed to call me, but she cared about us as much as we cared for her, and she felt like we deserved to know what happened.

Because I work in the legal profession, my first thought was, “But wait! Non-competes are disfavored in Colorado—how can she be bound by one?” I looked up the relevant statute (Colo. Rev. Stat. § 8-2-113, for any other legal nerds out there) and found out that actually, physicians are specifically allowed to be bound by non-competes in Colorado—there is an explicit exception for physicians. I was shocked and dismayed.

Shock eventually turned to action, and I started questioning how to change the law. I reached out to the Colorado Medical Society and spoke to their lobbyist. She informed me that although CMS was unable to work on this legislation due to other, bigger issues, they get many calls complaining about physician non-compete agreements, and I should keep working on the issue.
I did.

I researched my local senator and representative. Although neither was someone I would have voted for, I was their constituent, and I decided eventually to reach out to the woman, my senator, thinking she may be more sympathetic as a mother. We met in the summer (after the May end of the legislative session), and she agreed to advance the legislation the following year—IF she was reelected.
That senator had a contested election race versus someone I personally know from a different point in my life who is aligned with me politically. Despite the promise of a personal favor, I had to vote for and support the candidate opposing her—the person I knew from years and years ago. Thankfully, the candidate of my choice won the election! She is a good person who is smart and compassionate, and I am very glad for her that she was elected.

After the election, I waited a while to contact her about the physician non-compete statute. She was very busy, but she remembered me from way back when and agreed to meet. Both of us are busy moms, and it took a while for us to get together. But when we finally met up, she immediately agreed to try to help us, and started of thinking of possible solutions that would be acceptable to all of the stakeholders. She knew it was too late in the 2017 legislative session to advance a bill, but promised to write one for 2018.

Senator Z. is true to her word. She introduced SB 18-082in the beginning of the 2018 legislative session. Instead of eliminating the clause that allows physicians to be bound by non-compete agreements, she decided to carve out an exception for physicians who treat patients with rare diseases. That way, she would not be opposed by the major stakeholders—the hospitals and hospital associations.

She received support from several medical organizations, including the Colorado Medical Society, the major medical liability insurer, the Colorado rare disease community, and more. In fact, no one opposed her proposed legislation. She scheduled the Senate committee meeting and asked me to attend to testify on Gracie’s behalf.

Words are my forte. I am a writer, and although I’m not usually a speaker, I knew I could write something compelling. So, I wrote the following proposed testimony:

Thank you, Senators, for allowing me to be here today.

My name is Susan. This is my daughter, Grace. Grace is 7 years old. She loves Taylor Swift, mermaids, and puppies, and she has a rare disease called Posterior Column Ataxia with Retinitis Pigmentosa. This means that she has ataxia, or poor balance, she is legally blind, and she does not feel pain.

Not feeling pain has been the hardest part of her condition to manage. We figured out she couldn’t feel pain when she was about a year and a half old. She would get round wounds on the tips of her fingers, or deep cuts in the creases, and we could not figure out where they were coming from. Eventually, one Easter Sunday, she got a deep cut on the crease of her right index finger, and we knew she hadn’t been around anything sharp—except her own teeth. Her physical therapist questioned whether she could feel pain, and we thought back on all the times she banged her head without crying or kicked her heels into her high chair, and we realized she could not. That realization led to a long and arduous medical journey with many, many doctors in specialties I’d never heard of before, like Infectious Disease.

Gracie has had many, many infections in her short life. She has been hospitalized about 15 times, always for some type of infection. Some of these infections were very serious, even requiring amputations of some of her fingertips. We have relied on infectious disease doctors to manage her infections and find medications to prescribe that she is not resistant to. We have had mixed luck with infectious disease, but in 2013 we found Dr. [D] at Rocky Mountain Hospital for Children. Dr. [D] was a Godsend. She understood the complexity of Gracie’s care. She listened to my concerns and answered my questions honestly, never getting offended if I questioned a particular treatment. But in January 2015, she left Rocky Mountain and went to a different hospital. Unfortunately, the terms of her non-compete agreement prevented her from talking to us or having any influence on Gracie’s care.

We still have not found an infectious disease specialist who understands Gracie like Dr. [D] did. Grace has had some infections in the past few years that became very serious because she was not prescribed the right medication in time by her new infectious disease specialists. Her new infectious disease doctors try to treat her like a 7-year-old with a normal immune system, not comprehending the seriousness of her condition. If Dr. [D] could have continued to help with her care, I believe the doctors would have treated Gracie more quickly and she would not have spent as much time in the hospital.

Senators, please, I urge you to support this bill. It is very hard to find doctors who understand and who are good at treating patients with rare diseases. To lose them to a non-compete agreement is absolutely devastating. Please consider my daughter and all other children and adults with rare disease when voting on this bill.

Thank you.

I brought a picture of Gracie to woo the senators—because who can look at her adorable face and say no?

Senator Z. warned me before the committee hearing that this was a “kill” committee—that likely the bill would not make it out of the committee. I tried not to get my hopes up, but I knew I had a secret weapon—Gracie. She is the most charismatic person I’ve ever  met, and maybe, just maybe, seeing her picture and hearing her story would be enough to convey to this Senate committee that she was worth voting for.

Miraculously, beautifully, unbelievably, it worked. Gracie’s Bill passed out of the kill committee with a 4-1 vote. It would likely pass through the Senate with no further opposition, since it made it through this committee.

Around this same time, our local CBS station contacted me to do a story on the bill. The reporter came to our house one snowy February day and interviewed me and Gracie. She did an amazing job with the video editing, and produced a feel-good story I was proud to share:

(For some reason, I can’t embed the video. Click on the link above to watch it on the CBS page.)

The bill passed through the Senate with only one “no” vote—from the same senator who voted “no” in the kill committee. I met with the representative who would carry the bill in the House, and he agreed to hold the committee meeting on the morning of March 13. Again, I would testify in support of the bill. I amended my prepared testimony to be pertinent to the House committee members, and nervously readied myself for the hearing.

The House committee hearing was much more stressful than the Senate committee hearing. Perhaps it was because I had been told to expect the bill to die in the Senate committee, and I was hoping it would advance through the House. Perhaps it was because the logical part of my brain knew the delay between the Senate and the House had given the opposing political party members time to find excuses for opposition. Nevertheless, I was very nervous going into the hearing.

My testimony went well, and the committee members asked me very good questions about Gracie’s care and the impact this bill could have on her. I was even able to say at one point that although this bill would never get Dr. D. back for us, it would be important for so many others, and I am doing it for them, not me. (It’s true. I don’t think we’ll ever get Dr. D. back, but we may be able to prevent this situation from happening for other people.)

The bill passed out of the House committee on a straight party line vote. Many of the politicians who voted against it said they would support it if a proposed amendment was adopted. I was not sure if this was truth or just lip service, but graciously accepted their platitudes. The bill was up for 2nd Reading in the House last Friday, and, true to their word, those politicians who had opposed it in committee spoke in favor of the bill (as amended) on the House floor. Third Reading in the House happened quickly and uneventfully this Monday morning. And on March 21, the bill was returned to the Senate for approval of the House’s amendment.

I am happy and relieved to say that the bill has now passed through all stages of consideration in the Senate and House. Its next stop is at the desk of our governor, who has no reason to veto and will certainly sign the bill. I do not know yet if I will be able to attend the bill signing with the governor, but it would be very cool if I could attend. I might even bring Gracie. After all, she is the amazing one who has been the impetus for this whole thing.

Now, time for another side project…maybe I’ll start trying to find childcare for the summer. That’s a whole different battle!

Wednesday, March 21, 2018

The viral World Down Syndrome Day video: 50 moms and 50 kids sign why they wouldn't change a thing

In honor of World Down Syndrome Day, a group of moms in England created the video Wouldn't Change A Thing, and it's gone viral. The moms—all part of the Facebook group Designer Genes, for parents of children with DS born in 2013 and 2014—are seated in their cars with their four-year-olds, signing and lip-syncing to the song A Thousand Years. As mom Tania said, "It's really important for us to show something positive. No one is suffering here, life is pretty good, and there are big smiles all round."

This beautiful video may be about Down syndrome, but I'd say that many of us who have children with disabilities relate to wanting to sing the praises of our children—who are as perfect as any others.

Tuesday, March 20, 2018

Cerebral Palsy Awareness Month and the stuff I'm still not aware of

The parent-teacher conference was, overall, very good. Max's therapists were in attendance, and there was consensus that overall Max is a cheerful, enthusiastic, determined student. "Every child should have a Max in their class!" one teacher noted, and I practically saw bluebirds fluttering around the table like we were in a Disney movie.

During the physical therapist's turn, she spoke about getting Max to use his right arm, the one that's weaker and that he typically neglects, to climb stairs. Then she mentioned that she would also be working on helping him better maneuver narrow spaces. 

"What do you mean?" I asked.

She meant standing on line. She noted that it's a challenge for Max, both in terms of not knocking into other people and side-stepping to get out of others' way—a movement that does not come easily to him. 

Ohhhhhhhh. Standing in line. Another one of those things that had never occurred to me as being an issue for Max, mainly because Dave and I are always there to help him navigate lines. But of course, it's one of those life skills he's going to need as he gets older and more independent. 

March is Cerebral Palsy Awareness Month. Over the years, I've shared what I've learned about CP, including the things I didn't know before I had a child with cerebral palsy and what cerebral palsy is (and isn't). But as the parent of a boy with CP, I am still learning all the time about Max's condition, and how it affects his body. Sometimes, it takes people with CP to remind me, as happened with Max's recent wish to move to Jamaica (now changed to Florida). An adult with CP noted that warm temperatures can feel better to a person with CP, since the cold can make muscles tighten up and warmth can relax them. 

There are so many intricacies to having CP. Max's affects both sides of his body, and there are hundreds and hundreds of muscles involved; having CP means your brain can't clearly shoot your muscles signals what to do (and yes, it all starts with your brain). When Max was a baby, I was shocked to learn that the CP even affected his ability to swallow. It was why a good portion of his bottle dribbled out of his mouth at every feeding, and I had to give it to him with several cloth bibs tucked beneath his little neck. What mother doesn't want her baby to eat heartily? Thankfully, Max  had a good appetite and he chubbed up just fine.

Cerebral Palsy Awareness Month was created to raise awareness about the condition. For parents of children with CP, it's cerebral palsy awareness month every single month, day and year. As I continue to develop as Max's mom, I'm still learning—but I'm not longer freaked out. I'm reassured that Team Max is there to help support and enable Max, and help me and Dave support and enable him, too. 

These challenges that we find out about are not the "defects" I once thought they were; they are organic parts of who Max is and how he moves. There are work-arounds and ways to make sure he is as stable as he can be. At the conference, the PT mentioned that she regularly moves furniture and objects in the room before each session so that when Max walks in, he needs to really focus on navigating the space. I can't say that I will be continuously rearranging our home, but we can encourage Max to handle lines on his own when we go out for burgers (and let him pay for his food himself, too).

I hope we get to the point where Max himself is able to express his feelings about how CP affects him and makes him feel. That would be some amazing cerebral palsy awareness.

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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