Thursday, April 26, 2018

Sesame Place opens as a Certified Autism Center: 5 things to know


Forecast for the opening day of Sesame Place this Sunday: Sunny day, clouds swept away...and autism friendly. Earlier this month, it became the first theme park in the world to be designated as a Certified Autism Center. What does that mean, exactly? Here, five things to know:

1. There's staff training involved. 
The vast majority of the 1600 employees at the park, located in Langhorne, PA, went through specialized training. "The training focuses on areas of sensory awareness, environment, communication, motor and social skills, program development and emotional awareness," says Cathy Valeriano, Sesame Place park president. "It consisted of several hours of online videos, robust reading materials and a comprehension test." Staffers will be required to undergo training every two years for the park to maintain the certification.

2. Oscar the Grouch, Big Bird, Elmo and their pals got trained, too.
"There are a few places in the park where the characters know not to interact with guests," says Valeriano. As for the park's parade, she continues, "We suggest that guests stand near the beginning of the parade route if they do not wish to have any character interaction."

3. Pre-planning for sensory needs just got easier.
A Sensory Guide developed by the International Board of Credentialing and Continuing Education Standards (the same people who do the Certified Autism Center credentialing) is now available, download-able from this page. It's a comprehensive guide, 43 pages long, that details how a child with sensory processing issues may be affected by each attraction, along with the shows, parade and character dining. It gives each sense—touch, taste, sound, smell and sight—a rating of one to 10, with 1 being low sensory stimulation and 10 being high. There's also a Special Access Program, which allows visitors with disabilities to enter attractions through designated entries; an Accessibility Guide with an overview of attractions, services and facilities; and noise-cancelling headphones available free at The Welcome Center and Family Care Center. 

4. There are quiet rooms. Squee!
Theme parks are not known for being oases of calm. Max had many a meltdown as a little guy when we took him to various ones. Sesame Place is know offering two quiet rooms, located by Big Bird's Rambling River. They have adjustable lighting, and a comfy seating area.

5. Sesame Street has other autism cred, too.
"Sesame Place's certification aligns with Sesame Workshop's mission to increase awareness and understanding of autism," says Valeriano. Back in 2015, the Workshop debuted the nationwide initiative Sesame Street and Autism: See Amazing in All Children. In 2016, it released 12 videos featuring kids with autism. Last year brought us Julia, the first muppet with autism—and she happens to be available for photo opps at Sesame Place.

Wednesday, April 25, 2018

To the moms who cry in their cars after IEP meetings: Someday, you won't


I saw the tearful Facebook live video posted by blogger Dena Blizzard last week after she'd been to her daughter's IEP, and my heart went out to her. She wanted her daughter to be tested orally instead of with a traditional written exam, so the team could figure out what she really knows.

"I only have a few more months to figure this out before high school," Dena noted. "I said, 'Isn't this what we should be doing?'" And the case manager said, "I am not making any changes to her IEP, that is the high school's job." At that point, Dena said, "my head exploded." They had three months left—why wouldn't they change the IEP now if it wasn't working? Why wouldn't they try everything? She sat in her car, despairing.

I have been that mom crying in her car (and, at times, during the IEP meeting). I am not that mom anymore. Well, not during the last one, anyway, cause you never know. These meetings can really push your mom buttons—there you sit, surrounded by the very team of people supposed to be educating and nurturing your child's development, as you hear that your child can't get what he needs. You feel frustrated, anxious, angry, perplexed, disgusted with the system and helpless, all the feels.

If you're new at this, you will get used to IEPs and even master them. There may always be roadblocks and curveballs, but you will get better at handling them. It might be hard to believe but someday, you may not even dread them and actually find joy in them.

With at least a dozen IEPs under my belt, I'm a bona fide IEP veteran. (Hey, where's my medal?) We just had Max's annual one, and it was great...words I never thought I'd say. And so, for any parent who's left an IEP and sobbed in their car, here's hope—and ways to make the process less painful and more productive.

First up: request a copy of the IEP draft.
Coming to an IEP meeting without first reading a draft of it is tough—you have to absorb, react, question and come up with requests and changes as your child's school team sits there. I've learned to ask our district coordinator to make sure I get a draft of the IEP in advance. That way, I walk into the meeting with a list of notes. It's also given me a chance to get feedback from Max's private therapists, if need be. Now, reviewing a draft won't work for an IEP you are creating from scratch or majorly reworking, as that needs to be composed as a team. But usually, it's possible. Also helpful: Often, teachers reach out ahead of time to ask what goals I have in mind for the IEP; if they don't, I reach out to them. FYI, it is your right to record IEP meetings, so do so if it'll help. (Not for nothing, this also sends the message that you are not a parent to mess with.)

Yes, you will run into roadblocks—and you can blast through them. 
You do not have to sign the IEP presented to you—you can challenge it. Dena noted, "Yeah, I might send an email." But there are other options, too. If an advocate did not previously work, you could try another or an education attorney. (If you're ever in need, you can find an expert through the Council of Parent Attorneys and Advocates.) You can get supportive letters from the doctors, specialists and therapists in your child's life that bolster your request for changes. You can go over your case manager's head and to her supervisor, and then to the district superintendent. Reach out to other parents in Facebook groups for parents of children with disabilities and ask their advice. Forget squeaky wheel; be that sound-barrier-breaking wheel. 

Sometimes, you will lose, but you can try, try again.
You don't have to wait a full year to make changes to an IEP—it is your right to request an IEP meeting at any time to make changes, especially if there is a lack of progress toward goals, you get new information from an evaluation or reeval or you just have concerns, period. Put your request in writing, and explain the reasons why. In any case, if your child makes a major grade shift—say, going into first grade or high school—it is likely you will revisit the IEP a couple of months after school starts, and the new team has gotten to know your child. That's what happened with my boy Max when he entered high school. Remember, one "no" on an IEP does not mean the door is permanently closed. (If you want to familiarize yourself with your child's IEP rights, check out the articles at Wrightslaw.)

It helps to do IEP prep work.
Over the years, I have expressed any large concerns I've had to our case manager ahead of time. Recently, I reached out to ours about the fact that Max's transportation to school takes more than an hour—sometimes, an hour and twenty minutes—despite the fact that we live less than 20 minutes away. I'd posted about the problem on Facebook, and found out that it is possible to have transportation accommodations written into the IEP. I went back and forth a few times with the case manager. I got a letter from Max's pediatric neurologist to support why being on a bus for an hour-plus was medically problematic. By the time we discussed it at the IEP, it took just a couple of minutes: it will be written into his IEP that he would be the last to board the bus and the first to get home. 

Also get the ball rolling at parent-teacher conferences.
I knew that Max would benefit from another session of a therapy at his school, and so, I brought it up during a parent-teacher conference last month. I laid out the reasons, which included safety ones. I figured I'd start my campaign before the IEP. I know how hard it is to get extra therapy sessions, especially in high school, where therapy is less of a focus. To my surprise, Max got the extra session, and we found out about it before the IEP. I'm not saying that making a request at a parent-teacher conference works, but I think it can pave the way.

Invite your child to the IEP.
Max has been coming to IEPs for several years now, sometimes for the entire session, sometimes for just part of them. He needs and deserves to be there, as the IEP is about him. It's empowering for him to voice his wants and needs, to hear how great he's doing, to be a part of solving problems and to learn self-advocacy. At yesterday's IEP meeting, Max and all of us agreed that he should ask questions if he is not understanding something (he tends to not like to admit that). We also agreed that he might someday enjoy doing computer work for a living.

Max brought the house down when our case manager asked what his favorite subject is.

"Lunch!" said he. 

Tuesday, April 24, 2018

When you obsess about your child's diagnosis: group therapy


"My baby had an intracranial bleed at some point when I was pregnant, and the brain damage was very large in the MRI image the geneticist showed to us," writes one mom. "At five months old he has an intermittent lazy eye, some difficulty focusing his gaze, and head  wobbling when held upright and trying to focus, but has otherwise met milestones so far. We are trying all sorts of therapies with him. There is one thing I keep obsessing about. At birth, his head percentile was in the 10th to 15th range, and it has now fallen to the 1st percentile. I can't even say the micro...y word. Our doctor suggested removing all labels from his file. Positive thinking is one thing, but facts are another. I am going to be returning to work soon, and need to find a way to stop obsessing over head size and constantly googling about children with micro...y. Help."

I knew how this mom felt, as I also used to obsess over Max's head size when he was a baby. In one of my more anxious moments, I asked the neurologist whether Max might resemble that shrunken-head guy at the end of Beetlejuice, in the Netherworld Waiting Room. I vividly recall laughing through my tears after I said it, and he laughed with me, because we both knew it was crazy talk.

Discussing my anxieties about microcephaly with the doctor and the therapist I saw weekly helped. From the get-go, Max's neuro told us to pay attention to the child in front of my eyes, not the MRI film. While it took time for me to heed his advice because I felt compelled to keep searching for an answer that didn't exist—what a small head size could mean for Max's cognition and future—I finally forced myself to stop looking it up. The only time I thought about it was when Max got measured at pediatrician checkups, and while I still worried ultimately I accepted that Max's head was growing on its own curve. This has pretty much been the story of Max's development: He has proceeded on his own timeline, and in his own way.

Please, share your experiences and insights with this mom.

Monday, April 23, 2018

Better late—or never


Ben's been going to the same music class that Max went to at his age. Last week, Max had a school break and our sitter ended up taking both of them. She sent me an amazing video of Max.

Max wasn't doing a lot of stuff at two and a half. He wasn't talking. He struggled to grasp stuff. He was not yet walking. Our sitter used to take him to music class, and every week I'd say, "How'd it go?" and she'd say, "He seemed to enjoy himself," she'd say. And I'd ask my questions: Did he make any sounds? Was he able to hold a drumstick? A bell? No, no, no.

Then one week I had the day off from work and I took Max to music class, and saw for myself. Max couldn't hold the instruments. He didn't make sounds. He seemed somewhat interested in what was going on, but not that excited. I sat there holding him on my lap as all the other kids banged on drums and sang or chatted. When it was time to dance, I held him in my arms and danced with enthusiasm I didn't feel. I felt sad for Max that he couldn't enjoy the class. I felt alone as a parent.

As the years went by, the pangs about what Max couldn't do receded. I learned to stop comparing him to other kids and I accepted the fact that he would do what he would do (although any occasion when he was surrounded by typically-developing peers was still hard). When he learned to eat by himself, read, ride a bike, they felt like gifts. When he has not accomplished things, they have not been mourned; I do not expect. This is not to say I do not believe in Max and his abilities, or encourage him—of course I do. I just don't set him (or me) up for disappointment. In other words, better late...or never.

"Never" is not awful. There are plenty of things I'll never do—I'll never be president of the United States, I'll never win an Olympic medal (unless they create one for carb loading), I'll likely never scale Mount Everest. This is OK. I have my talents, same as Max. There are plenty of awesome things I have done, and will continue to do, same as Max. I do not pity him for what he isn't capable of, because there are many things he can do.

I have no doubt that Max will continue to progress and accomplish stuff. Whatever and whenever, it's all good. And so, that video last week. I'd told our sitter to bring Max's iPad to Ben's music class, as I wasn't sure he'd want to join in. And there was Max, shaking one of those little egg rattles like a boss and looking so happy. Thirteen years after he first attended music class, he was having a great time.

And I hadn't expected it.

And it was awesome. 

 

Friday, April 20, 2018

The Disability Blogger Weekend Link-up: Click and tell


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: Love That Max: I am his trusty translator, but I will be glad not to be

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, April 19, 2018

On being a parent who depends on the kindness of others


Years ago, as we were headed home from Disney World, Dave and I stood by the security line at the airport with Max and Sabrina, unsure of what to do. The line was extensively long, the kind to trigger a Max meltdown—he couldn't handle crowds or long waits back then. I decided to see if I could find someone to help, and I approached a TSA officer and explained our situation. "My nephew has autism," she said. "I totally get it." And then, she escorted us through the line.

I shared this story in the wonderful new book When Action Follows Heart: 365 Ways to Share Kindness. It's by my friend Susan Spencer, the Editor-in-Chief of Woman's Day who also happens to be one of the nicest people I know. The book is full of simple yet meaingful ideas: print out a quotation or song lyric a friend likes and frame it for her as a surprise; visit a local animal shelter with your kids to play with the animals; take five minutes to write a current or past coworker a reco on Linkedin; designate a Crazy Food Day in which your family gets to have pizza for breakfast, pancakes for dinner and ice-cream anytime. (At last: validation! I do this because it's laziness, but evidently, it's a good deed.)


Blanche Dubois once famously said, in A Streetcar Named Desire, "I have always depended on the kindness of strangers." Until I had Max, I was the opposite: a fiercely independent person who only wanted to accomplish things on her own. And then, suddenly, I was that person dependent on the kindness of strangers—at restaurants, at events, at nearly any public place where Max needed a helping hand or an extra helping of empathy.

I took the assistance, of course. It leveled the playing field for Max so he could participate in an activity the same as others kids were, or if it could offset his sensory issues. Still, there have been times when the kindness seemed to emanate from a place of pity, and that I've never made peace with. It made me uncomfortable when a woman who worked at Dunkin' Donuts commented to Dave about Max not being able to talk and then gave him free donuts. Some people thought I was being overly tough, and I don't ordinarily look a gift jelly donut in the mouth, but it's upsetting when people think that Max's condition is sad enough to merit freebies. This is not a sentiment I want to encourage.

In general, though, I have learned to become a more gracious receiver of kindness, thanks to Max. As the mom of a child with disabilities, you figure out pretty fast that it takes a village to raise your kid. For sure, I could stand to dole out more kind deeds—and I've got 365 of them sitting on my nightstand. What's something kind that someone has done for you lately? 

Wednesday, April 18, 2018

The Very Hungry Toddler


One Sunday morning, the warm sun came up and there, in his crib, was a very hungry toddler.


He ate some cookies and one half of a chicken nugget with the coating rubbed off and half a bottle of ketchup. But he was still hungry.


On Monday, he ate two bananas, one tablespoon of almond butter with most smeared on the table and in his hair and a Family Size box of Cheerios, but he was still hungry.


On Tuesday, he ate 30,000 goldfish, but he was still hungry.


On Wednesday, he ate a couple of crunchy rice thingies that seemed vaguely healthy, and gleefully ground one into the couch and all of its crevices. Then he gnashed his terrible teeth and roared his terrible roar and.... Oh, wait, wrong story. Anyhoo, he was still hungry.


On Thursday, he downed a couple hundred applesauce pouches, but he was still hungry.

On Friday he ate through a half slice of all-natural-antibiotic-free turkey, one pea, one strand of spaghetti, one yogurt that he insisted on eating with a fork, one-eighth of a chicken sausage also without preservatives or anything bad of course, one cupcake, and one-sixteenth piece of organic cheese, but then he spit it out onto the floor.

That night his belly hurt, and he used it as an excuse for postponing bedtime.

The next day was Saturday. The toddler gnawed on some construction paper and after that he felt much better.

Now he wasn't hungry anymore—and he wasn't a little toddler any more. He was a big old hangry toddler who was never satisfied with his meals.

He built a small fort out of blankets. He stayed inside for all of three minutes, then he pushed his way out. Where was his applesauce pouch? AND HIS GOLDFISH?!!!!

The end.

Tuesday, April 17, 2018

I am his trusty translator, but I will be glad not to be


"I hope she feels better!" Max is saying into the phone. He's talking to a relative who has an ailing mom. I can hear the man saying, "What, Max? What?"

And so I lean over and say into the speaker, "He said he hopes she feels better."

Max does not much like to use his iPad speech app, TouchChat with WordPower, at home. He feels that people in his family ought to understand him, although he knows that we don't always, and that his app makes it easier for others to know what he is saying. (He does have an incredibly clear way of saying "I hate you!" to me. Of course.)

Over the years, we've been known to tease Max about the way he repeats himself, in the hopes that we'll finally get what he is saying. (See: Want to buy a monkey?) As he gets older, though, it's getting more important for him to understand—or, more importantly, accept—that his words are not always understood, and he needs augmentative assistance.

Max is getting a little better about this. He goes to a teen night program at his high school where students from another school visit, and Max has been asking to take his iPad along. One night, he also brought copies of cards from the conversation game TopicTalk. But at home, he wants us to understand him, and that is not always possible. In fact, Max used to think that it was our problem, not his, that we didn't get what we were saying. He used to lean in closer and shout stuff into my ear.  He doesn't do that as often anymore.

When we're out and he doesn't have his iPad on him, I translate for others: 

"He'd like avocado on his hamburger, please!"
"He's asking where you go to school."
"He wants to know if those sneakers come in red."
"He wants to know why you have no hair."

OK, I didn't say the latter, which Max said to someone in our neighborhood who's bald. Thankfully, the guy didn't understand him, and I later had a discussion with Max about Thoughts You Keep On The Inside.

I am always there for Max. But we are getting to the point where I'd prefer to not to serve as his faithful translator so he'll use his speech app, and be more independent about communicating. I do realize that it is not the most fluid form of conversation to have to type out words. I have high hopes for voice-recognition software like Talkitt, which has been in development for a while. I'm realistic about Max's speech potential: While he continues to make some progress, his articulation will forever be challenging for others to understand. The stroke he had at birth caused this, as it can in adults who've had strokes. But for sure, I am grateful for the speech he does have, and the various ways he expresses himself—with typing, gestures, nodding his head, shooting me dirty looks.

I can't always be there to be his translator, especially because this job just doesn't pay very well. No, really, I have a feeling that as Max matures, he'll increasingly want communication independence. And that's the way it goes: I can't force anything—Max has to want it himself in order for it to happen.

Word.

Monday, April 16, 2018

The people who knew you back when


I visited an old friend in Chicago this weekend with Sabrina, and saw a couple of people I hadn't seen since my twenties, before I had kids. This sort of thing is both fun and freaky, because part of me still feels twentysomething (it is not my abs), and it's hard to believe so much time has passed. 

I know how these conversations usually go: We talk about where we live, number of kids, ages, who we married, what we do for a living. We reminisce about activities/parties/good times. Sometimes, we get into discussions about where our children go to school, and I note that Max has disabilities and attends a private school in another town. Sometimes, people ask what he has and when I say cerebral palsy they look troubled and I say, "He's doing great!"

I wish I could tell them just how far Max has come and how much I've learned from him about people with disabilities, but there's only so much you can get into when you're standing at a party and catching up . So I show them photos, I look at photos of their kids and we move on. And I end up feeling a little sentimental about how relatively carefree life used to be pre-parenthood, even though it didn't feel like it back then because work drama and boyfriend drama and family drama is still drama. And I'll think about how I never could have imagined I'd have a child with disabilities—and how I couldn't have imagined I'd be lucky to have Max.

A couple of those discussions happened. And then, a woman said something I wasn't expecting.

"I remember how you were always laughing at something," she said. 

I thought back to that neonatologist in the NICU who I'd wailed to on more than one occasion, and who somberly told me that having Max would change my personality, and she meant not in a good way. 

I was definitely a ball of sadness, stress and anxiety early in Max's life. But then, I returned to me. Not completely the old me, because parenthood can mean being more cautious and less spontaneous than you used to be, in part because of the logistics of bringing our brood along and in part because even if we were by ourselves we wouldn't want to do anything risky.  Dave and I were ice-hiking on a glacier in Alaska in the photo above. These days we're more like to be hitting Adventureland at Disney.

"You loved to laugh," that woman added.

"I still do," I said.

Friday, April 13, 2018

The Disability Blogger Weekend Link-up: Show us what you've got


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: Thank you, God, for giving me an obnoxious teenage boy

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, April 12, 2018

My mom hoarded cookies in her closet, and I turned out OK


I saw my friend Stephanie in our office building recently, and as we compared notes about raising teens I griped about Sabrina stealing my beauty products. I don't wear much makeup but I have a thing for skin products, including luxe shower scrubs and this overpriced little pot of glow cream that makes me look like I'm 23 again, or something like that. Sabrina regularly digs into both of them. I finally hid the glow cream from her and stored the scrub out of sight, then felt a little guilty about that.

"Don't!" said Stephanie. "She has more collagen than you!" 

Wise words. 

As moms, there's this expectation that we will gladly give all of ourselves and our earthly possessions over to our children. That included the small piece of salmon I was about to dig into last night for a really late dinner. "Can I have it? I'm hungry!" Sabrina begged. I gave her most of it. Can she have the necklace/makeup bag/scented candle/skin cleansing brush/clutch/Montblanc pen I got as a gift, she wants to know. Happily, she could care less about most of my clothes or shoes. (Actually, maybe that's a bad sign, but I'll take it.)

I inherited the tendency to stash stuff away from my mom. She used to hide packages of cookies and bags of mini chocolate bars in the closet in her bedroom, where my sister and I regularly raided them. (I  haven't yet resorted to socking away Oreos in my room, but I'm not beyond it.) Otherwise, my mom was a completely selfless person, ready to give Judy and me basically anything she owned, along with all of her time.

Like many parents, I am pretty selfless by necessity—I don't have much time to hang with friends, go to shows, bike or do other activities I love because I'm busy driving my children places, feeding them, bathing them, shopping for them, helping them with homework, or doing any of the kajillion things that go into raising kids and managing a household. Yada yada you know.

As parents of children with disabilities, there are times when we need to be extra selfless. And so you sit with a child having a sensory meltdown in the lobby of the restaurant, as your extended family relaxes inside and eats. Or you give up Saturday morning workouts so you can drive your child to speech therapy. The sacrifices—financial, physical, mental—are many. Yada yada, you know.

I'm not doing my children any favors by regularly putting their needs ahead of mine. Kids and teens should see parents taking time for themselves, and having their own nice things. It teaches our children that the world does not actually revolve around them, and that it's important to have a sense of self.

Me, I like my creature comforts. So when Sabrina asks if she can have some object of mine, I'll respond, "No, but you can borrow it." (That or I'll find a good hiding spot.) And while I suck at daily me time, I've got bigger plans. Last summer, I went away for a long weekend with my two best friends to celebrate our birthdays. Nowhere fancy, just fun. Last week, we decided to go on another nonfancy-but-fun getaway. You can bet I'll be bringing my little pot of glow cream along...and hiding it when I get home.

Image: Flickr/Mike Mozart 

Wednesday, April 11, 2018

Lesson from Max: perfection is in the eye of the beholder


Max has a perfectionist streak. He notices when stuff is out of place in the house or there are crumbs on the dining room floor. This also applies when he does his homework on the SnapType app, which enables you to upload a photo of a worksheet and then type in answers or draw circles around text.

He likes his homework done just so. If the text he's typed isn't totally lining up with the ruled line on the worksheet page, he'll move the text box so it is. The other day, he had to choose which of two words should come first alphabetically. He'd draw a circle around the word, then he wouldn't be satisfied with the shape so he'd erase it and do it again. Once, he even did it a third time.


I sat on the couch, watching Max carefully make circles. It takes a lot of focus and effort for him to isolate one finger and manipulate it on the screen. When he was done, there was a page full of squiggly circles. 

I pondered it. To me, they were squiggly. To Max, they were great. He didn't care that they weren't your usual perfect circle—they were the best he could do. And to him, that was perfect enough.

There it was, another life lesson from my children. I mean, how much more chill and enjoyable would life be if we took satisfaction in our personal best‚ and didn't regularly aspire to standards of perfection?

True, this doesn't apply to your job because whatever you hand in or present had better be your boss's idea of perfect, not just yours. But it has resonance for parenting and other parts of life where we put pressure on ourselves to live up to societal expectations—our appearance, our home's appearance, our career goals.

Thanks for the perspective, Max. Keep up the excellent squiggly work.

Tuesday, April 10, 2018

Thank you, God, for giving me an obnoxious teenage boy


Dear God,

Max got off the school bus yesterday and when I said "Hi, Max!" from the porch he sneered at me. Then he stomped down the walkway and when I gave him a hand to help him up the stairs he pushed it away so he could do it himself, but not before basically hurling his book bag at me.

I had a feeling, God, that you were showing me just how LUCKY I am to have this boy. I mean, would I have believed when he was a tot and first diagnosed with cerebral palsy that he would someday clomp down that path with such 'tude? No, I likely wouldn't have believed it. If someone had told me back then that he would step off the school bus by himself and huffily walk up the porch stairs on his own, I would have been gleeful. If I'd known that one day he would hurl his book bag at me—hurl! With his own two hands!—my mind would have been blown. What feats of gross-motor and fine-motor skills!

Oh, but God, you wanted to make it extra clear just how fortunate I am. Because when I asked Max to sit down so I could take off his sneakers and foot braces, he said, "I hate you!" And I reminded him, as I regularly do, that it's not nice to say such things to your mom. And he said, "I hate YOU!" with extra emphasis on the "you" and I gave him a look and said "I love you." Listen, I tried to have faith when he was little that someday he would be able to talk, but at times I wavered. And now, here was this boy proclaiming "I hate YOU!" Using his words, and enunciating them so clearly! Amazing, right?

Oh, but wait for it (well, you know what happened, of course). When we did his homework together, Max absolutely, positively insisted that the word "sneeze" should alphabetically come before "scam" and when I said "Sorry, that's not correct" he said "You're wrong!" and a few seconds later when he realized I was right he went to change the answer when I wasn't looking but I saw and jokingly said "Aha!" And he responded "I hate you!" And I was soooooooooo sure, God, that you wanted to raise my awareness of just how awesome it is to have a boy who can read and type and take a stand and who possesses that cocky teen arrogance that he is right at all times! While I might have been  anxious about his cognitive impairment years ago, you have made it clear that a person can have intellectual disability and be plenty bright and obnoxious!

And you weren't done yet, God. Because after dinner, when I informed Max that I needed to dash out with his sister for a quick doctor visit to get some testing, he insisted that HE needed to go to the doctor because HE had the sniffles. And then he snorted and pretended to cough for emphasis. And when I said that he didn't need to go to the doctor he glared at me and announced "I'M SICK!" Him giving me a guilt trip: Just, wow. Unbelievable.

Before I left, I pointed out that since he wasn't feeling well, he should go to sleep early. And naturally, God, you had him give the answer that would have me reeling from the wonder of him: "NO!" Actually, it was more like "NOOOOOOOOOO!" so I could get the full impact.

So, in sum, thank you, God. When Max was a baby, and we had no idea what the future held for him, we could have never imagined that what we would get is one obnoxious, cocky, righteous, defiant, guilt-trip-giving, hate-you-mom-spouting teenage boy.

I am a lucky, lucky mom! And I just need to keep telling myself that!

Monday, April 9, 2018

When you're grateful for the person with disabilities working at the store


I'm not usually overcome with emotion when I go to Home Depot, but that's what happened this weekend. Sabrina and I were down at the Jersey Shore on a girls' trip, and as she was taking a nap I ran out to get a few things and made a pit stop to pick up some paint.

When I walked in, there was an elderly woman in a motorized wheelchair greeting customers.

"Hi, can I help you find something?" she asked.

Her voice and speech pattern sounded like Max's, except hers was slightly clearer.

"I'm good—I know my way around, thanks!" I said.

As I walked off, a rush of emotion hit.

— I was deeply grateful that this Home Depot employed someone with disabilities. It's sadly not that common to see people with disabilities working in stores.

— I was grateful that this woman had such a visible presence. The more people see those with disabilities employed and interact with them, the better for people to understand their competence and worth. Yes, worth. Because most of us who have family members with disabilities have seen that some people out there just don't get it. What our loved ones often do get are pity stares, the kind that have made it clear to me that people don't understand Max's merits and can only see what they consider unfortunate deficits.

— I felt pangs of concern about Max's work future. Could he do a job like that? Would he want to? Would people have the patience for him to type out words on his speech app? Probably not, although maybe by then there will be faster technology. That or we'll have electronic chips implanted in our heads that will tell us everything we need to know.

I stood in an aisle, processing all this. I found the can of spray paint I needed and went to check out.

"I have something to ask you," I said to the staffer at the register. "I have a son with disabilities, and I was happy to see that woman in the front greeting people. How long has she been working here?"

"Oh, Dee's been around for ten years, maybe twelve," she said. "She's great! The store employs some other people with disabilities, too."

"That is really good to hear," I said.

I walked outside. I took a deep breath, then another. I got in the car and drove off, and as I did I thought how awesome it would have been if Max was there to see Dee, too.

Photo: Flickr/spycomps

Friday, April 6, 2018

The Disability Blogger Weekend Link-up: post one, read some


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: He does not want what he hasn't got: youth with disabilities and friendship

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, April 5, 2018

Introducing Fireman Ben


During my pregnancy with Ben, I wondered about several things: How would Dave and I deal with sleep deprivation as not-so-new parents? How would we manage three children? What would happen when Ben got to the inevitable stage of liking fire trucks?

I wondered about the latter only because Max was adamant that he alone could be the only firefighter in the house. "Ben will be a policeman!" he declared on more than one occasion. I understood this, on some level. Max was fiercely proud of his identity as Fireman Max; attached to his impressive collection of fire trucks and firefighter paraphernalia; and possessive about his relationship with our local firefighters.

Well, here's how things turned out: I don't remember much of anything from Ben's first few months, but evidently we all survived; Dave and I are juggling just fine most days or at least parts of most days; and the fire truck thing has, amazingly, worked itself out.

Ben is now into trucks of all kinds. He has assembled his own collection, but of course, likes to play with Max's fire trucks. Max used to say "no" but recently, he's cool with it. At bedtime (Max goes to sleep before Ben does), Ben has been trying on Max's various firefighter hats. Max has also been OK with this.

And then, the other night, Max said, "Ben can be a firefighter too!"

Or at least that's what I thought he said, because I couldn't believe it.

"Did you just say Ben could be a firefighter?" I asked.

"Yes!" said Max, grinning. "Fireman Ben!"

Whoa. Maturity, in action.

He proceeded to note that Ben could work at a different fire station. I said that we'd see how things turned out, because Ben was just a little guy trying out stuff and maybe he would want a different job when he got older.

I watched Ben sorting through Max's pile o' hats. They sit on a bookshelf, right next to an oversized poster of Max featured at a school event when he was around 8.

That Max: He's getting so big.


Wednesday, April 4, 2018

He does not want what he hasn't got


Yesterday I signed Max up  for an upcoming Sunday event for youth with disabilities, run by university students. It's a carnival, with arts and crafts, games, movies and performances. As usual, I felt a rush of gratitude that such events exist.

If it were up to Max, he'd spend his hours roaming Home Depot to shop for furniture for his future home in Florida, where he'd like to move, and watching YouTube videos of fire trucks around the country. He also enjoys taking walks around our neighborhood, going to malls and eating out. Shows, too, and maybe the occasional museum visit. I am grateful for all of this, because when he was little his sensory issues made going anywhere hard for him (and us).

Dave is Max's best friend. The two of them eat bad food together, go on drives and generally roam around, often with Ben in two. But while I am incredibly grateful for their bond, and for the social opps that exist, I am also heartbroken about the lack of friendships in Max's life.

The students in his classes, both at his former school and his current one, don't live close by. On occasion, I arrange hangouts, and Max goes to parties with classmates. His school hosts social events where students from other high schools spend an evening with students at his school. Max loves these evenings—he is a really friendly, social person. Which just makes it that much harder for me to deal with the lack of friends in his life.

For a while, a really cool teen boy was visiting Max through a program. A few months ago, the visits stopped. This boy no longer had the time or dedication for Max. Max cried when he forgot to show up one day. I understood, on a certain level; teens get busy. But then, I felt awful for Max. A new person, a girl, has taken his place; Max really enjoys her company, yet he still asks about that boy.

Although I have forged many paths for Max and opened many doors, I can't make friendships happen.

Max doesn't talk about this. He is content. Only I know what he is missing—best friends who bring fun and adventure and comfort and support and perspective and reality checks and shoulders to cry on and all sorts of consolation, serenity and happiness. And while I try not to project my own experiences and feelings onto Max, the thought of him not having this makes me sad.

And so, I'm glad for the social events that crop up. Unlike friendships, their satisfaction is short-lived, but what does that matter? Max has a great time.

As sometimes happens, I have to push my feelings aside and remember that he is not me. Max is his own person, he has a good life and he is happy.

Tuesday, April 3, 2018

Because I am in a carb coma...


I have basically eaten my lifetime supply of carbs these past few days since Passover began (which is basically how I feel every year), the reason for my carb coma. So today I am just going to share a couple of outstanding carb-y recipes.

Sabrina made this flourless cake by Martha Stewart for the holiday. It was all sorts of amazing. We didn't have espresso powder but decaf coffee worked just fine.

There is a very good reason this stuff is called Chocolate Toffee Matzo Crack.

Ever tried matzo brei? It is basically eggy fried matzo, and Ruth Reichl's version (actually, her mom's) is THE BEST. She's called it her "ultimate comfort food." Try it and you'll know why. Apologies in advance to your arteries.

Image: Flickr/Nancy Heller

Monday, April 2, 2018

The five types of children


Every Passover, when we have our first seder (the traditional meal), read the haggadah (the telling of the story of the exodus from Egypt) and get to the part about the four types of children, I think about Max.

As the telling goes, there are four types of children, each of whom views the seder in different ways: the wise child, the simple child (who is curious, wide-eyed-and wondering), the defiant child and the child who does not know how to ask. For years, Max was the last child. Then he became the fifth child: the sensory meltdown child.

A few years ago, he began sitting at the seder table. Last year, he sat through part of the first one before asking to be excused, then stayed for the second. And this year? Well, Max was the defiant teen. He started roaring right at the start—yes, roaring—as our extended family tried to make it through the haggadah.

"I hate holidays!" he declared.

We tried to ignore him. We asked if he wanted to just sit in another room by himself. Nope. He wanted to roar.

Oh, he knew what he was doing. "It's his way of being a teen," Dave said. I wasn't accepting that. I told Max he had to go outside if he wanted to roar, because he was scaring Ben and the other kids. Then I made him go out on the porch, except he roared and banged on the door. Nothing was helping; he just stood around roaring, until I got up to serve more food mid-meal and Max slid in my seat and cracked up. We all did, and it felt good. My nerves were pretty frayed.

I worried about the second seder. I let Max know ahead of time that he was free to sit in another room and chill. He hovered nearby as we started, then he decided to join us. While he didn't want to eat, he chatted. He was excited that April was coming, and it would be getting warmer. He discussed plans for next Passover.

"Let's eat out!" he said.

Hmmm. I guess he is the wise child, after all.

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: 

http://denver.cbslocal.com/2018/02/19/gracies-bill-girl-cant-feel-pain/

(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!


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