Friday, September 28, 2018

The Disability Blogger Weekend Link-up: Rock the post

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: I don't want him to hate his disability, but that's his choice

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, September 27, 2018

I don't want him to hate his disability, but that's his choice

"He told me he hates cerebral palsy," I said to the pediatric neurologist. "Max, do you have anything you'd like to add?"

"NO!" said Max.

We were at our annual visit, and Max wasn't excited about it. "I'm not sick!" he reminded me as we headed over. He was happy to let the doctor know he planned to move to Orlando, and even showed him the big house he'd like to live in with Dave and Ben. (Sabrina and I are not part of is moving plans.) Then Max said a word and I had no idea what he was saying. He kept repeating it.

"Max, use your iPad!" I said.

He wouldn't.

"Max, type out the word on my phone," I said, holding it out to him.


I told the doctor that these communication stand-offs happened frequently—Dave or I wouldn't know what Max was telling us, and he'd refuse to type it out.

Max kept saying the word, growing increasingly frustrated.

Doctor C. started talking: "He is in the process of identity formation, and at the point where he is trying to figure out how he is like and not like other people, and it's possible he thinks that using the iPad so people understand him makes him feel lower than his siblings," he explained. "It's a power struggle, and he doesn't want to give in and use it. He wants to feel more powerful than his condition."

Ah. That made sense. "Max has to understand that like all of us, he has his deficits, and he has to be smart and work around them or be stubborn and be stuck," the doctor said. That made even more sense. Suddenly, I was seeing Max's refusal to communicate through an app in a whole new light.

"Max heeds help understanding that he can use the iPad for power," Dr. C. continued. One thing he suggested: Create a "pissed off" page. Now, encouraging your teen to let you know just how annoyed they are with you is not something most parents want, but it seemed like exactly what he needed.

So this weekend we'll be working phrases like "You're annoying me!" and "Leave me alone!" into his TouchChat app, along with any other choice sentiments he'd like. (I am going to draw the line at "Eff you, Mom!") The doctor also suggested we could try a tech day at home in which we all communicated using our devices, so Max could feel equalized.

Max just wants to fit in, as teens tend to want to do. But when I hear that he hates CP, it's painful ttpto hear. Nobody wants to see their child struggling. Plus, I don't see Max as being so different from his siblings. Yes, he has more physical challenges and doesn't speak quite like they do, but every one of them has their special needs.

I've come a long way in my journey as the parent of a child with disabilities, passing many emotional landmarks along the way: grief, hopelessness, despair, anxiety, fear and frustration. I have gotten to the point where I see the CP as one part of who Max is, not all of him. But Max's journey is his own, and I have to accept that there are times when he will feel negatively towards his disability. As one adult with disabilities commented on a recent post, "We get tired of all the appointments, pain, surgeries and missed chances, even as we recognize that who we are is often intrinsically tied to our condition."

At the end of our appointment, I mentioned that in October we're going on a Disney Cruise. Max noted that we were going to have some Halloween fun on it. Again, Max said the unintelligible word, but this time he said it in a new context and I got it. He was saying, "It's my favorite holiday!" When he'd been saying the word before, he'd been noting that Sabrina and I could come visit him there during holidays.

And so, my journey continues. I have to figure out how to best support Max at the times when he struggles with the realities of his disability, or downright hates it. I have to help him see that we all have our challenges and that we can work around them. And Max's journey continues, too.

Wednesday, September 26, 2018

What's on your child gratitude list?

When Max was a little guy and I'd get anxious about his development, as parents of kids with disabilities tend to do, I used to jot down stuff about him for which I was grateful—what was uniquely awesome about him, stuff he enjoyed, progress he'd made. It helped shift my brain out of worrying about the future, if only for a while. Here's my short list these days, plus a blank one to cut and paste into the comments section and share your responses, if you'd like.

One word I'd use to describe my child is: Sunny
One of my child's greatest abilities is: His sense of direction—there are times when he knows better than I do which way to turn, no app required
One recent awesome accomplishment is: Writing his own blog post
And another recent accomplishment is: Ordering for himself at restaurants
His happy place at home is: Home Depot (to furnish his fantasy Orlando house)
His happy place away is: Disney World
One thing that makes him proud of himself is: Getting into the car on his own and shutting the door—he flashes me the biggest grin every single time
I never imagined that someday he'd... Have complete conversations with me.
One of the most memorable things he's ever said/communicated is: The first time he said my name, "Ohmmy."
One thing he does that always makes me smile is: When his little bro is acting naughty, Max will lean over to him so they're at eye level and say "No, Ben!"

And here's a fill-in-the-blanks list for you:

One word I'd use to describe my child is: 
One of my child's greatest abilities is:
One recent awesome accomplishment is:
And another recent accomplishment is:
His happy place at home is:
His happy place away is: 

One thing that makes him so proud of himself is:  
I never imagined that someday he'd...
One of the most memorable things he's ever said/communicated is:
One thing he does that makes me smile is:

Tuesday, September 25, 2018

My new house in Orlando, Florida: by Max

This post is from Max, who typed it by himself. 

I want to move to Orlando, Florida.
I Want to go Disney World in Orlando Florida
Monday Magic Kingdom I Want to go on Rides I will See a Happily Ever After Fireworks
Tuesday I want to go to Epcot Center I want to go to test track
Wednesday I Want to go to Sea World I will See a Dolphin Show
I will go Swimming with Dolphin at Sea world
Thursday I want to go to Universal Studios i will See a Despicable Me
Friday I want to go to Hollywood Studios I will See a Frozen Show
Saturday I will go to Swimming Pool at Holiday inn
I will come back to New big house in Orlando Florida.

Monday, September 24, 2018

He's got what he needs to succeed

When Max gets it into his head that he wants to do something, he won't let up. This doesn't work out so well with things like his plan to move to Orlando, even though he reminds us daily and tries to persuade us by noting that our neighborhood/city/state are "disgusting." But this trait does come in very handy for working around his challenges.

It was sheer determination that lead Max to commando crawl like an army soldier around our home when he was a tot, because his arms and legs weren't yet strong enough for him to crawl on all fours. I was thinking of this yesterday as I watched him at the beanbag toss during his school's annual picnic. Max loves this game, although aiming doesn't come easy to him. No matter. He literally tried dozens of times to get the bean bag into the hole as another parent stood nearby and handed them to him.

Maybe people who don't know Max well would mistake his disability for inability. And for sure, there are things that do not lie within his powers—same as us all. Right now, he's still learning to work around them.

Last night, we had one of our random conversations about cerebral palsy. Max asked why he had to visit the a doctor this week, if he's not sick, and I explained that the neurologist we visit once a year sees a lot of kids and teens with cerebral palsy. At which point Max asked if Sabrina had cerebral palsy or Ben did. "No," I responded. Then he said "I hate cerebral palsy!"

My heart sank, although I didn't know if that was just another flash of teen 'tude, given that likes to say "I hate ___" about various stuff (where we live i.e. not Orlando, vitamins, fireworks, me).

"Why do you hate cerebral palsy, Max?" I asked.

He said, "I don't know."

"Max, a lot of people have cerebral palsy," I said. "It's part of who you are."


He didn't want to talk about it more, so I filed it under "To be continued," as these conversations always are. At bedtime, we watched videos I'd taken of him at the bean bag toss, and he gave me one of his proud grins.

I hope that as Max matures, his understanding of what it means to have CP continues to grow. I hope he embraces it and sees it for what it is: one part of who he is. I hope that I can also help him understand that every one of us has challenges to overcome, along with our gifts, talents and strengths. But I do know that he already realizes that when he sets his mind to something, he often can succeed—and for that, I'm seriously grateful.


Friday, September 21, 2018

Share a fave post on The Disability Blogger Weekend Link-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: Hey, special needs moms, you're worth $828,836 a year

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, September 20, 2018

Hey, special needs moms, you're worth $828,836 a year

You're not likely to find "Special Needs Mom" listed on LinkedIn, but when it comes down to it, we moms do a whole lot of jobs really, really well. What, exactly, would a special need's mom salary be if she were paid for the work she does? People were musing that question over on my friend Brenda's Facebook page the other day. Someone said $150,000, but then others decided it could be double that, especially for moms who are home full-time. Well, I did the math—and the answer is $828,836.

Here's a look at the wide variety of jobs we do daily, with a breakdown of the salaries:

Communications director: $72,558
Patient advocate: $40,496
Education advocate: $48,529
Medical coordinator: $33,015
Nurse: $67,490
Medical insurance claims processor: $37,563
Feeding/swallowing specialist: $61,000
Home health care aide: $24,040
Social director: $54,518
Physical therapist assistant: $56,580
Occupational therapist assistant: $60,341
Speech therapist assistant: $57,884
Music therapist: $50,808
Behavior management specialist: $40,326

PLUS! The annual salaries for the standard jobs we moms do:
Muber (Mom+Uber): $30,000
Housekeeper: $26,133
Short-order cook: $27,450
Organizer: $40,105

And I'm not even counting grocery bagger, personal shopper and bath attendant. And really, could you even quantify boo-boo kisser, crayon guider and arbiter of making sure everyone gets the same sized slice? Nope.

The grand total: $828,836

If only!

Job conditions can vary, depending on how clean the house is, whether laundry's piled up everywhere, whether we are well stocked with caffeinated beverages and whatever moods our children are in. The benefits are pretty good, especially when we see that our kids are making progress, thriving and generally happy. And I'd say we moms do a kick-butt job every single day—no slackers here. Bonuses may come in the form of hugs or kisses but, hey, that's priceless. And when you get right down to it, so are we.

Here's a little reminder to print out and tack onto your fridge for the next time you're overwhelmed, frazzled or just plain over it.

Wednesday, September 19, 2018

11 parenting sins I haven't committed

Today is the Day of Atonement and, as usual, I do not lack material. A partial list: I admit to telling Max that Disney World was temporarily closed so he would stop bugging me about going. Baaaaad. I have been glutinous, polishing off my children's beloved cookie dough ice-cream late at night. So wrong. I have pilfered plastic straws from fast-food places when they are the thick kind that enable Max to practice drinking. I've had improper thoughts involving swear words when Max has let out screeches, two sins in one.

Then there are the perceived transgressions parents have, especially those of us who are raising children with extra needs, that IMO do not qualify as actual sins. This is what I won't be asking forgiveness for this year:

I committed no sin in forgetting to send in various school forms throughout the year or neglecting to sign the kids up for various stuff. My family should actually be glad, given the vast amount of things I remember to do, that my brain has not yet exploded. Come to think of it, certain members of my family should be asking forgiveness for certain eye rolls that happened after said stuff was forgotten.

I committed no sin in getting frustrated with Max for refusing to use his iPad to communicate. Max often prefers to use his own voice with us. But even me, his good old mom, can’t understand everything he says. And so, when he keeps repeating he same word, phrase or sentence and I have no idea what he means, I tend to exasperatedly say “Max, use your iPad!” and when he still refuses to type out what he's saying I will exasperatedly point out, "Max! If you don't use your iPad, I cannot understand you!!!" Exasperation etc.

I committed no sin in not doing every single one of the exercises the physical, occupational and speech therapists have recommended for Max—just not humanly possible.

I committed no sin in pretending to still be asleep in the morning when one of my children asks "Mommy, are you up?" 

I committed no sin in being one of the world’s more pathetic, UberEats codependent cooks or enabling Sabrina's addiction to Snyder's Hot Buffalo Wing Pretzel Pieces, which leave her hands orange-y. I nourish my children in other ways.

I committed no sin in not volunteering to be Class Mom.

I committed no sin in being glad about Max and Sabrina going to sleepaway camp this summer. It’s good for him. It’s good for me and Dave. Yay.

I committed no sin in being the most persistent, pushy, won't-take-no-for-an-answer parent to make sure my children get what they need—in academia, with bus transportation, with snagging doctor appointments, with getting the insurance company to pay for Max's therapies and treatments. Speaking of which...

I committed no sin for losing it with the insurance company reps, who would test the patience of G-d herself. (Some, however, may have some atoning to do.)

I committed no sin in refusing to indulge Max's obsession with yet another trip to Home Depot to furnish his fantasy Orlando luxury home. Dave, however, always agrees to go, and for that he will be getting extra holy credit today, I'm pretty sure.

I committed no sin in yelling at Max when his behavior got out of control. On occasion, I yelled at my other children, too. Inclusion!

Tuesday, September 18, 2018

Parenting a child who is multiple ages

Max and I sat down on Sunday to work on his Current Events homework. I told him we could check a local news site for an article to write about, and clicked on ours. He said, "Orlando!" As in, where he'd like to move. A discussion ensued about whether he should report on Orlando if he didn't leave there; part of the point of current events is to be more informed about what's happening in your area, as well as nationally and internationally. 

And there I was, debating with a teen boy who is mature and bright enough to know what he wanted to do for his homework but who also signs his homework "Fireman Max." Dave hit the nail on the head this weekend about parenting Max when we were out to dinner and we started talking about Max's stem cell infusion, which he got when he was 6. We'd both really liked the pediatric neurologist who had examined Max before the treatment. "I can see the brightness in his eyes," he told us. Dave remembered a comment he'd made: "Parent him as if he was a child of different ages," he said. He knew that Max's development was coming along at various levels. 

The same is still true, except it's trickier. In many ways, Max is like any other teen—he's got a mind of his own, he can eat copious amounts of food, he's interested in exploring, he likes to test limits and he'd like more independence. He is learning to advocate for himself, especially when it comes to his allergies. The other night, I bought a carrot cake for my mother-in-law's birthday. "Let me see if it has nuts in it," I said as I went to check the label. "Yes, it has nuts," Max told me. Sure enough, it did. "See? I KNOW!" he said. It's his favorite phrase, besides "I told you!" and "I'm moving to Orlando!"

Yet in other ways, Max does not act his age. I can have a conversation with him, but he does like to repeat the same phrases a lot. He understands abstract concepts like time, death (to some extent) and what is right and wrong, but not history, government or math so much. He has firm opinions about what he likes to wear, but isn't so motivated to learn how to dress himself. When I take him to programs where staffers are not familiar with him, I tend to tell them that his chewing is toddler-like. I don't mean to be infantilizing, but Max could choke on the same foods that are dangerous for little kids—popcorn, marshmallows, grapes, chunks of hot dogs, carrots or meat—because of his oral-motor challenges.

The hardest times are when he melts down. Being rebellious is a trademark of teens, but Max's responses can be on the immature side. And then I'm dealing with an angry teen acting like a young child. For some reason, Max does not like barbecues (you'd think he'd enjoy them given the presence of fire and smoke and his firefighter aspirations but, no). Sunday, we decided to have one and he stood in our kitchen wailing and repeating "I HATE BARBECUES!" After some backing and forthing, in which I kept noting that the rest of his family wanted a BBQ, he took consolation in the fact that he could have mac 'n cheese. Although throughout dinner he kept grumbling "I hate barbecues."

Encouraging Max's independence is also challenging—it's the parent equivalent of walking a tightrope, because even though I want to pull it off and I'm careful, I worry about missteps. In the last couple of months, we've let him go to the movies alone twice, somewhat nervously (us, not him). Both times, he saw Incredibles 2, his new fave. The other day, I was home with Max and Ben and needed to get stuff at the drugstore. Max really wanted me to leave Ben at home so he could watch him. I knew that wouldn't be safe for either one of them. When I said no, Max said "Awwww" and I could tell he was really disappointed. Our compromise was that later on, he alone got to watch Ben playing on our front porch.

"You're a great big brother!" I told him, and he beamed.

Monday, September 17, 2018

Screen time: not a total brain drain

Max likes to watch a whole lot of fire truck videos on YouTube. He's fond of ones taken in New York City and Orlando, where he plans to move. I have never fully decided whether this habit is good, bad or neutral. I mean, any screen times takes you away from doing activities that don't involve sitting on a couch, so there's that. But fire truck videos seem more innocuous than dippy tween sitcoms or video games. Turns out they have a bit of educational value.

Max has a Weekend Report due every Monday at school, with fill-in-the blanks for what he ate, went to see, watched and listened to. (He uses the SnapType Pro app on his iPad). It was a given what "watched" would be for last Friday: My boy went to see an early evening showing of Incredibles 2 all by himself. Yep. It was the sixth time he was seeing the movie, and he asked to go alone. (Not that any of us were dying to see it again.) He was pretty proud of that.

I was especially gleeful to see what he typed about where he went on Saturday ("I went to New York City I saw 3 fire trucks responding") and what he watched ("FDNY fire truck responding on YouTube). I had no idea he knew that word. Then I realized it was straight off the YouTube fire truck videos, some of which have "fire trucks responding" in their titles. Max had picked up the word from there, and was using it appropriately.

Max's vocabulary is coming along, slowly but surely. Every single new word is exciting. So I felt a smidge better about his obsession with fire truck videos. And yes, we've tried to get him to watch other stuff. For now, it's fire trucks. Responding!

Friday, September 14, 2018

The Disability Blogger Weekend Link-up is ready and waiting

What to do if you're new here

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

Like this: When you don't have enough love to give all your children, and it's OK

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.

Wednesday, September 12, 2018

When you don't have enough love to give all your children, and it's OK

How often do you feel like your children aren't getting the best of you? Me: approximately every single day. But I feel less so after our rabbi absolved parents of that guilt in one of the most powerful sermons I've ever heard.

Monday and Tuesday were Rosh Hashanah, the Jewish New Year. I sat in the sanctuary with Sabrina as Dave, Max and Ben went to the children's service. "My daughter vomited two weeks ago," the rabbi began his speech. He and his wife had a tough year. First their four-year-old was diagnosed with HSP (Henoch-Schonlein Purpura), a disease that causes inflammation of the blood vessels. As they tended to their son in the weeks that followed, their seven-year-old daughter started to complain that her legs were hurting. Then her stomach didn't feel so good, and she lay on the couch a lot and watched TV. Focused on their little boy's health, the couple didn't pay a lot of attention to her symptoms. And then, she was diagnosed with the same disease, only a much worse case.

The rabbi took it very hard. How could he have ignored his own child? Didn't he have enough love to give them all? But, no, he didn't, he acknowledged to the congregation. 

Tears streamed down my face as I sat on the wooden bench next to Sabrina. I'd often felt like I wasn't giving her enough attention when she was little because Max needed so much of me. She was the child who could—feed herself, hold a toy, color a picture, sing the alphabet, go down the slide—and Max was the child who could only if we helped. Max is a lot more independent now but with Ben here, I tend to feel like two out of three of my children are not getting enough of me—oldest, middle or youngest. I am Firefighter Mommy, coping with the largest blaze and hoping the less dire ones will put themselves out.

The rabbi grappled with his guilt, and ultimately forgave himself for being human. As much as he wanted to, he couldn't be there at all times for every child, every congregant, every cause. He noted that during this period of soul-searching and reflection, many of us vow to be better people—which often implies doing more. We'll do more activities/exercise/yada yada more. We'll be better parents. But instead of trying to be perfect, he urged, we could strive to be the best version of ourselves. He mentioned Serena Williams, who almost died in childbirth and who was asked by her coach to give up breastfeeding her baby girl to train for her comeback. As she told Time magazine last month, "Nothing about me right now is perfect, but I am perfectly Serena."

If the leader of our congregation could stand in front of hundreds of people and proclaim that he did not have enough love to give all of his children at once, we can all do the same. It's not horrific or awful, it's the truth. There is no shame in acknowledging that we are parents, not superheroes, especially those of us who have children with disabilities, medical conditions and extra needs. It seems like we'll be less stressed, less anxiety-afflicted, better moms and dads if we could just accept it.

I for sure can't give my three children equal amounts of attention, care or help once. I can't show all of them the same amount of love at once. But in the rabbi's enlightened words, I can strive to be the best version of myself. I can put my phone down and listen more intently. I can be diligent about picking my battles, and I can take parent time-outs as need be. I can find try to the patience even when it's slowed to a trickle. And I can stop guilt-tripping for not having enough of me to give each of them all of the time. I hope—no, I know—that my children feel the love, even if I'm not able to always show it. 

Tuesday, September 11, 2018

The girl who can't be forgotten today or ever

It's been five years since I first found her name: Melissa Renée Vincent. This is the girl whose face I saw on "missing" posters everywhere in Hoboken, NJ after 9/11. I never stopped thinking of her, finally googled her, and vowed to never forget her.

Many people remember Melissa, including those like me who never knew her. Since I first wrote about her, I've heard from a sorority sister, a college friend, and a woman whose daughter lives in Melissa's old building and who passes her memorial every day. By all accounts, she was a beautiful person inside and out. 

To honor her memory this year, I've made a donation to Tuesday's Children, a nonprofit founded to help the children of victims that has expanded to assist other communities impacted by violence.

"There is no death, daughter. People die only when we forget them," a mother tells her daughter in Eva Lun, by Isabel Allende.

Melissa Renée Vincent, we will not forget. 

Monday, September 10, 2018

A blood test for autism: the good and the bad

Metabolic differences in the blood can indicate autism in about 17 percent of children who have it, a new study in Biological Psychiatry reveals. And a blood test will reportedly be available by the end of the year to screen for markers of autism spectrum disorder. This could prove great for helping children—but a negative for public perception of autism. 

NeuroPointDX, a company focused on diagnosis and treatment of autism founded by the mother of a son with autism, conducted the test in collaboration with the MIND Institute at the University of California California, Davis. Researchers compared plasma from 516 children with ASD to that of 164 children without it, and detected abnormalities in three amino acid groups in 16.7 percent of children with autism.

A test for autism could diagnose children as young as 18 months old; children who have developmental delays would be prime candidates for testing. "The sooner families can receive information that their child is at high risk for autism, the sooner they can begin effective behavioral or other therapies," notes Geraldine Dawson, director of the Duke Center for Autism and Brain Development. The average age for autism diagnosis, research has found, is more than 4 years old. But children who are diagnosed before age 4 are more likely to get effective, evidence-based treatment, such as behavioral therapy.

I am all for the earliest intervention possible. We were acutely aware at Max's birth that he was at high risk for many physical and cognitive challenges, and he got physical therapy starting at a month old. I'm so grateful he did. Early Intervention was created because research shows it can boost development and increase chances of improvement for infants and toddlers. For children with autism, it can improve IQ, language ability and social interaction.

When Max was a baby, cerebral palsy seemed so scary and awful. This is both because I didn't know anyone who had it, and because our culture makes disability seem more like a negative than a positive (or even a neutral). And now I know, as Max has clearly shown me: You can have CP and have a good life. But see, that's the challenge here. As word gets out about a blood test for autism, people who lack experience with loved ones who have it may further categorize autism as a Scary Bad Thing. Because that's usually what blood tests are for—you get them to check for disease, cancer, anemia, infection.

This downside doesn't outweigh the positives of a blood test for autism, and its potential to help children. But the test sure won't be doing much to stop the stigma. Even as companies continue to make progress that may benefit people with autism, I hope they'll help contribute to the cure of ignorance and misunderstanding. I hope they'll make it known that there is all kinds of neurological diversity in this world. I hope they'll contribute to nonprofits and programs that help people better understand and embrace autism. Or maybe, as is often the case, spreading that message will be left to nonprofits, people who have family and friends autism, and autistic people themselves.

Image: Flickr/Lori Greig

Friday, September 7, 2018

The Disability Blogger Weekend Link-up is live

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 unique joy some people bring to our world

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, September 6, 2018

Eating out with your children is so relaxing

"I want to sit there!"

"I'm sitting here!"

"I no sit on chair! Stroller!"

"I'm reallllllly hungry, I'm going to order a lot of stuff, OK?"

"I want steak!"

"I'm reallllllly thirsty, can I get juice?"

"My water on the floor."

"When is the food coming? I'm reallllllly hungry."

"That's too spicy! I no like it!"

"You can have the salmon."

"I love steak!"

"Stop talking so loud! The people at the other table are staring at us!"

"My rice fall down."

"I'm almost finished with my food and I'm still hungry."

"I hold the spoon! Spoon too big! Fork! I want fork! Fork too big!"

"NO CHICKEN. It's disgusting!"

"Hey, why does he get the whole bowl? I want half. Actually, can you order me a bowl of that, too? I'm reallllllly hungry."

"My body needs water!"

"I like lemon!"

"Can I have your napkin?"

"My rice fall down."

"Did you ever notice that rice kind of looks like those little white worms?"


"I all done."

"Ugh, I am so full! My stomach hurts."

"I want cookies."

"Can I have your water, Mommy?"

Wednesday, September 5, 2018

The unique joy some people bring to our world

"THE TRAIN IS HERE!" Max announced. We were standing on a crowded platform last Thursday morning. Most people were fixated on their phones, but there was Max, ecstatic at the sight of the 7:27 a.m. People around us smiled.

Max has been a cheerful, happy camper since he was a tot. It's part of his personality. 

This was the first time I'd taken Max to work at the office. When he was little, I wasn't able to juggle his care and my work. I couldn't park him somewhere and have him color or snack because he couldn't do those things on his own. Then I ended up freelancing for nine years. Last year, I started a new job and the other week, Max announced that he wanted to come in with me to work. He is now able to occupy himself (iPad for the win!) and mature enough to understand that I would be working, and I said yes. We were both really excited. I like showing off my children to colleagues.  

When we got to New York, we navigated our way through Penn Station, just a little less hustling and bustling than usual because of the upcoming holiday weekend. On the subway, Max excitedly asked about each stop and struck up a conversation with a guy standing near us who said he had the day off work. "Awww," said Max, sympathetically. "I'm going to work!" At my office building, he enthusiastically greeted the security guard and coworkers. He giggled when he saw pictures of himself on my desk. He admired the view out the windows and (bonus!) the two guys washing windows. I posted a paper "Fireman Max" name plate in a quiet spot and he sat with headphones on and watched YouTube videos of fire trucks, his favorite online pastime.

Mid-morning, the most amazing thing happened: our office had a fire drill. Max listened raptly to the warden's instructions. When he asked for a few volunteers to do searches in case of emergency, I worried that Max was going to raise his hand. I doubt the guy had ever seen anyone in an office so out-of-their-head excited about a fire drill.  

Max had requested lunch at a steakhouse (he is in a major steak phase) but settled for sushi. He ate his avocado-eel rolls with relish. "It's very good!" he informed the waitress with a big grin, and she flashed him one. "Eighteen pieces!" he told me several times, impressed by how much he'd packed away. Back at work, he said hello to more people and settled in with his iPad. As we left for the day, he told someone "See you Tuesday!"  

When I returned to the office yesterday after the long weekend, people mentioned how happy, friendly and funny Max is. Yes, Max is all that. Exposing him to new experiences and people that day reminded me of one of the many things Max brings to this world: pure, unadulterated joy, the kind that's catchy. He is living proof for living uninhibitedly. 

Make no mistake: I am not saying that Max is some poster child for being a happy camper "despite" his disabilities, because that demeans disabilities. And I'm sure not claiming he is always happy, because then he wouldn't be human. He has a 3D personality, same as any of us do, and his grumpy, testy, defiant, meltdown moments. Yet Max is also a person who savors life, and doesn't hesitate to show it.

We should all be more like Max.

Tuesday, September 4, 2018

File under: yet more school transportation crap to deal with

It seemed too good to be true. It happened all too smoothly. Well, pretty smoothly. And sure enough, it exploded last night.

Last April, after putting up with Max's hour and twenty minute bus ride to a school that is 15 minutes away from our home, I succeeded in having a shorter ride written into his IEP. Yes, you can do that; I hadn't known until I ranted about it on the blog Facebook page and other parents mentioned it. I got letters from Max's doctors explaining why long bus rides were not good for him physiologically or psychologically.

The next challenge, of course, was making sure a shorter ride actually happened—per the IEP, Max had to be one of the last kids on the bus in the morning and one of the first ones off. Sure, this was now an Actual Legal Thing, but we all know how that can go. And so, I contacted our transportation department at the end of June to get the ball rolling and make sure everyone was on board. I spoke with them in July again, and then in early August.

This is where things got good. Actually good. After I emailed our district's transportation coordinator and cc'd the principal and other key players a few weeks ago, she emailed right back to say she was coordinating a route with the bus people. Last week, I reached out again. And the coordinator emailed to say that she'd heard from the bus company and Max would be getting picked up about 45 minutes later than he had been, shortening his route to school to about 40 minutes. He'd have the same driver as last year, who'd been perfectly fine. I felt like I'd won the lottery.

A day later, I received a letter from the bus company stating the same. This was nothing short of miraculous, given that the bus company's usual m.o. was to have the driver inform the parent the day before school started when pickup time would be. One year, the driver called at 10:00 p.m. the night before.

I thanked our district's transportation coordinator. I emailed a thank you note to the new director of the bus company. I'd say that I jinxed us except a mess-up seemed inevitable.

My phone rang at 7:15 p.m. last night. It was Max's bus driver letting me know she would be picking up Max at the same time as last year and that the route was the same. 

After all that.

Nope, I told her. I had gotten a letter with the correct time. Ah, but no, she said, that route wouldn't work. I asked her if she knew what an IEP was. I explained that Max's bus needs had been written into the IEP and that the bus company had a legal obligation to follow the IEP.

Then I sent an email to the transportation coordinator and cc'd the usual suspects and the new director at the bus company. I noted that even if there was miscommunication, it was troubling because no parent wants to think that staffers at a bus company are not clearly communicating about their child's needs.

A few minutes later, a supervisor in our district emailed to say they would get to the bottom of this. And you know, they will and they have to and I'm sure it will all be OK by Thursday morning, when Max starts school. I think?

But for the bazillionth time I wonder: WHY DOES IT HAVE TO BE SO HARD?!

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