The joy of embracing chaos

"My kitchen this week is the opposite of an immaculate kitchen." This is how Sabrina used the word "immaculate" in a recent homework assignment. "Great," wrote the teacher. She even gave her a check plus.

I had to laugh. Our entire house is your basic disaster zone, because we're finishing up the kitchen renovation, unpacking boxes full of possessions, assembling baby gear and washing and organizing baby clothing.

This is the opposite of how life usually is at home. I like order. I grew up in a small apartment with a pack rat dad, and neatness has always been important to me for peace of mind. When life felt like it was spiraling out of control during Max's first year, and I didn't know whether he'd ever walk or talk, having stuff in place at home gave me some sense of order. At the very least, I could just close the door to our messy playroom and cluttered basement, working that out-of-sight-out-of-mind thing.

Max has made incredible progress. So much so that one reason we procrastinated having a third kid was because we were in a good groove with parenthood. We knew what to do, organized chaos at its best. And we knew we'd shake it all up by adding a baby to the mix. (The payoff being...A BABY.)

When you do a renovation, though, you have to give in to chaos. So for six weeks, I've ignored the pileup of boxes, furniture, paperwork, shoes, clothing, mail, construction material, rolls of toilet paper conveniently stacked in our foyer, you name it. Oh, and yes, the pileup of dust and dirt.

This has been incredibly freeing. Therapeutic, even.

As I write this, my desk is covered in forms for the kids' schools, paperwork to fill out for my delivery, bills, lists for Max's bar mitzvah in April, a box with rejected cabinet pulls I need to return, you name it. This is the desk we need to sock away in storage within the next week to make room for the baby's crib, and I have no idea where I'm going to put everything. But all I am thinking is, "I will deal tomorrow because I am so done for the day."

Old me used to stay up till midnight to neaten up the house and clear off as much work as I could from my plate. Post-renovation me (also known as 35-weeks-and-four-days-pregnant me) accepts that life as I know it won't fall apart if, say, I hold off another day on ordering Suzuki Violin School: Volume 4 for Sabrina.

Yesterday I was talking with a friend who recently had a baby, and we were laughing about how even dusting off a single shelf when you're a new mom can be quite the accomplishment, as much as you may struggle with your usual impulses to get things done.

The only thing I'm planning on with having a newborn: surrendering to a complete lack of control. And when Sabrina has another vocabulary assignment and writes something like, "My house and my mother are both in a state of disarray," I will once again laugh. A little hysterically, perhaps.

5 great tips for helping kids with special needs brush their teeth

Sometimes, it's an uphill battle getting any kid to brush their teeth, but encouraging children who have special needs can pose unique challenges. This, I know all too well. Max has oral sensitivity, which can make the act unpleasant for him (although he's had less of it over the years). And because of ongoing oral-motor issues, spitting out water is a challenge.

Oh, and then there's this truth from John Hendry, DDS, a dentist in private practice in Lafayette, Louisiana, who has served as president of the American Academy of Persons with Disabilities: "Often parents are so overwhelmed with all the other simple duties of caring for a special needs child that they don't put a priority on oral health and hygiene." Sigh if that sounds familiar. The goal for children is to brush two minutes for twice a day. Oh, and for the record: Studies have found that manual toothbrushes are just as effective as powered ones.

Dr. Hendry is a spokesperson for the American Academy of Pediatric Dentistry (AAPD), a membership organization that is sponsoring this post. Driven by the rise of tooth decay among children (40 percent of kids have it by the time they enter kindergarten, although tooth decay is nearly 100 percent preventable), the AAPD launched the Monster-Free Mouths Movement—a campaign that provides resources, tools and tips to help fight tooth decay and other oral beasts.

Dr. Hendry, also a founding board member and chairman of the Federation of Special Care Organization in Dentistry who has been honored for his commitment to kids with special needs, shares five key tips that make toothbrushing easier for kids with disabilities...and their parents.

1. Role play
Take a tip from pediatric dentists and try the "Tell-Show-Do" method of behavior modification. "We show children—often on a stuffed animal—what we hope to accomplish and allow the child to practice on the stuffed critter to make it a fun experience. They get to be the dentist/hygienist."

2. Tag team
Ideally, you and your husband can both pitch in with toothbrushing, especially early on in the process of introducing the habit to a child. "One person can hold and comfort," explains Dr. Hendry, "and the other can actually accomplish the brushing and fluoride application." Note from me: If you happen to have a third adult handy, he or she can pour you a glass of wine afterward! Tee hee.

3. Make the brush comfortable to hold
For a child with fine-motor-skill issues, notes Dr. Hendry, "toothbrushes can be adapted with a Play-doh grip, a bicycle grip or even a tennis ball."

4. Play a game
Dr. Hendry is fond of the "smile contest"—as in, "Let's see who has the biggest smile!" That way a child exposes his teeth for brushing. "The patient always wins!" says Dr. Henry. You can also entice kids with prizes or stickers, he continues: "Make it a game, but always reinforce with praise."

5. Put on some tunes 
"We have been very successful with getting kids to brush their teeth to their favorite music," says Dr. Hendry. "One special needs class brushed to Michael Jackson upon arrival to class, and every afternoon before leaving to a softer, country song. Occasionally on Mondays I felt like they had not brushed since Friday's departure, but I was comfortable they were brushing at least ten times a week! The hidden benefit is that most songs last at least two minutes, so we got them to brush for a significant amount of time without getting bored."

Check out the American Academy of Pediatric Dentistry on Facebook and Twitter, as well as the The Mouth Monsters hub.

I received compensation for this post, but all opinions (and dental challenges) are my own. 

Crowdsourcing: What to pack for having the baby?

Baby boy is due two weeks from today. (OMG!) It's been ten years since I last had a kid, and I have no recall whatsoever of what you're supposed to pack in the hospital bag besides basics like clothing and a toothbrush. Still, I have my priorities straight: I have made Dave assure me that he will get me sushi (one of my fave foods) once the baby is born. When I had Sabrina, we had a stand-off because he thought I shouldn't have it since I was nursing. He won.

Is there anything you took that made your hospital stay more comfortable?

Photo: Flickr/190.arch

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Smell cravings during pregnancy: Wha?!

The weird smell cravings started a few weeks ago. First, out of the blue, I needed to smell cedar. I told Dave, who unearthed a package of cedar blocks I'd gotten at Bed, Bath & Beyond and had forgotten about. He watched me rip open the package and inhale, and cracked up. I'd say this sure beats my potato salad cravings, especially because it's fat-free.

I didn't have smell cravings with either of my other pregnancies; it's a new preggo phenomenon for me this time around, like leg cramps and insomnia. And it just keeps getting more strange. I drew something for Max using a Sharpie and found the scent pleasant. Then I went to the paint store the other day to pick out a new color for our living room, walked in and was enthralled by the smell. I kept breathing it in as I checked out paint chips. (Eau de Paint Store: not a scent Estée Lauder will be debuting anytime soon.)

And then: Max and I were in our minivan driving around and we stopped next to a woman in a convertible smoking a cigarette. And it smelled good. 

When I Googled I found out that craving non-food items is not uncommon during pregnancy. It's called "pica" and it's considered a medical condition mainly because sometimes kids or adults actually want to to consume stuff like chalk, dirt, clay or powder, which makes my potato salad cravings seem pretty tame in comparison.

I haven't been down in our basement sniffing paint cans or anything. I haven't taken up smoking or sniffing Sharpies. But I have been sleeping with a small cedar block beneath my pillow. Delish.

Image source: Flickr/Roujo

Parent confession number 1,478,233: I won't feel guilty about that

Today is Yom Kippur, the Day of Atonement, the holiest day of the Jewish year. People traditionally fast until sundown, excluding children, the ailing and pregnant women (that would be me). (Not that I won't be partaking in a decadent break-the-fast meal later on.) (Because this baby really needs bagels and cream cheese.) We confess our sins and ask God to forgive us and give us a year of life, health and happiness.

Oh, yes, I have sinned. I have yelled at my husband. Screeched, some might say. I haven't visited my elderly mom enough. I have spent too much time looking at my iPhone. I've occasionally forgotten to help the kids with homework. Late at night, I've polished off their snacks. And that's just for starters.

But there is one thing I refuse to feel guilty about: the times my patience with Max dwindles, because he requires copious amounts of it. This is mainly due to his fondness for discussing the same stuff again and again, especially that he wants to be a fireman when he grows up. Also, he wants to be a fireman when he grows up. Also, he wants to be.... Plus he likes to do the same things repeatedly (visit our local fire station or find new ones to explore). Or, most nerve-grating of all, his habit of playing YouTube videos of fire trucks in action and echoing their sirens. Loudly.

I humor him. I nod my head enthusiastically. I say "Yes!" I have the same conversations again and again, like a real-life version of that old Bill Murray movie Groundhog Day. I put up with it. And sometimes, I snap. 

"Max!" I will say, sounding agitated. "I know you want to be a firefighter when you grow up, can we please discuss something else?" 

"Max!" I will say. "PLEASE! Can you lower the volume on the iPad?" And he will. Only he doesn't lower his own volume. 

"Max!" I will say. "We are not going to visit the fire station again, we have a lot of other stuff to do today!" And his bottom lip will jut out and tears will fill his eyes and inevitably I will at the least do a drive-by, or Dave will take him, thereby further enabling his obsession. 

Oh, to be sure, parenthood can generally test the limits of your patience. When Sabrina whines or calls me at work wailing because, say, she cannot locate her favorite pair of socks, I sometimes want to bang my head against the nearest cubicle wall. But Max's repetitive tendencies are a more regular, trying presence in my life. And I'm just not going to feel remorseful about losing my patience. Because you know what I always say: I am a mother of the human variety. And I have a whole lot of patience being tested.

I generally think I do a pretty good job of raising Max and Sabrina, too. Or at least I try to. So I give myself a pass on this one, and do not feel the need for repentance.

I now return to atoning for my other sins.

Image source: Flickr/Irina Patrascu Gheorghita

What not to expect from your child with special needs

Sunday night, I heard Dave and Max cheering and went upstairs to investigate. My boys were lying in bed, watching the Seahawks/Green Bay Packers game. 

"Good pass!" said Dave.

"Ohmmy! Ass!" said Max, pointing to the TV. (P's are not yet in his articulation repertoire.)

The two of them looked so happy and content, I didn't have the heart to tell Max it was bedtime so I let him watch for a bit longer. 

Later, I said to Dave, "Did you ever think you'd be chilling with Max and enjoying a football game?" 

"No," he said, and I knew just what he meant.

The gloomy NICU doctors did a number on our dreams for Max, for sure. Over the years, though, we've realized that having high expectations for Max does us no good. There is only so much we can control, and while we try to give him every recourse, resource and asset possible, and do everything we can to help him, at some point the progress has to come inherently from Max, whether it's cognitive, physical or otherwise.

Progress is not something we can prod, as I learned the hard and heartbreaking way during Max's early years. Max himself has to be good and ready to do something.

In some ways, accepting this has been harder for me than it has been for Dave. Of the two of us, I'm the more demanding person, the one who likes to be in control. Acknowledging that what will be will be hasn't come easy. I am also more likely to endlessly ponder and process. Dave, he's accepted Max for who he is right from the start. I've told the story before of the night, soon after we brought Max home from the hospital, when I could not stop sobbing.

"This is my worst nightmare," I said, referring to the stroke Max had at birth.

"Honey, look at him, does he look like a nightmare?" said Dave. "He's beautiful." 

Not once has Dave ever expressed regret over what Max can and can't do, including not playing sports in the usual way. Yet I know there's regret there. When we were cleaning out the basement a few months ago, we found a baseball bat still in its cellophane wrapping that a friend gave to Max when he was born. I noticed Dave looking at the bat sadly before he put it back on the shelf. 

Not having high expectations doesn't mean the opposite is true: Dave and I want the world for Max. We hope his speech improves and his cognition continues to sharpen. We hope academically he forges ahead by leaps and bounds. We hope he can someday live an independent life. We hope, we hope, we hope. 

Yet I do not harbor expectations, not even itty bitty ones. I hold Max up to Max. He will do what he can do. Accepting what he is capable of and delighting in what happens to come along is the happiest course of all. Nothing ever feels too small to celebrate. Especially the stuff you'd never find in any of the child development books. Like: Child will watch football games with parent.

Soon, Dave and Max may even be headed to a game (Jets!); Max is now saying he'd like to go to one. With headphones, please. And can they be sure to have mac 'n cheese?

But I'm drawing the line if Max wants to start hanging out at sports bars.

The stuff you Google at 4:00 a.m. when you're pregnant

It's 3:50 a.m. and I am lying in bed feeling some unusual motions in my belly. They are mini pulses, one about every four seconds. I've felt this happening a couple times before in recent weeks. But these go on for longer, a good ten minutes or so; they do not feel like hiccups; and they're unnerving me.

I have not had much pregnancy paranoia. I mean, I asked a lot of questions during the neurological scan, but until now I haven't been scared that the stroke that befell Max will reoccur, mainly because I'm the hands of excellent high-risk doctors and getting a whole lot of ulrasounds. Still: These pulses make me think of seizures. Max had them on the first day of his life, which is how we knew something was really wrong.

I try to talk myself out of the seizures. I think back to Max having a seizure in May and how his movements were rapidly jerky, not these evenly spaced pulses. But that memory is deeply disturbing and I have to force myself to quit thinking about it.

Really, the only continuous freaky thought I've had during this pregnancy is: What if I drop the baby? It's not that I even have nightmares about this—the thought randomly flashes into my head during the day. It is seemingly a totally irrational fear. These arms have held babies for a good part of my life. Long before I had kids, I babysat and was a camp counselor; I've always loved children. Oh, and yes, I've raised two kids, holding them securely the entire time.

I'm guessing this fear ties in to a story told to me by the physical therapist Max had when he was a baby. She once treated a child with severe brain damage. The mother had accidentally dropped her while going downstairs. "The baby went 'Bump, bump, bump,'" the therapist told me, and I've never gotten that "bump, bump, bump" out of my head. So yeah, maybe there is some underlying anxiety there about having another child with special needs.

I finally get out of bed, sit down at my computer and Google "pulsating movements during pregnancy." I learn about "practice breathing," which is totally normal. It sounds cute, even though it sure feels like anything but. Being me, I keep Googling and sure enough, there is a thread on an Epilepsy Foundation forum started by a parent whose child had a stroke. The doctor said it was possible her daughter had been seizing in the womb. And now I am scared. That's the problem with Google: It will validate your worst suspicions.

So I do the only thing I can think to do that will calm me—I crawl into Max's bed and cuddle up next to him. He leans over, sleepily, kisses me and dozes off again. I lie there for 15 minutes, listening to his breathing, and I relax. I go back to bed and fall asleep.

When I call the doctor the next day, he mentions practice breathing. He tells me that I could come in to have the baby's movements checked, but he's been moving normally all day long and besides, they'd have to catch the baby doing that rhythmic pulsating thing to get a clue about what it is. All my ultrasounds have been normal so far. I decide not to. I'll be back at the office in a few days for a check-up.

I've been feeling like I can wait for this baby to come; he's due by C-section three weeks from today. I'm not truly ready, although are you ever ready for that next child? But now, I'm feeling like I can't wait.

The Special Needs Blogger Weekend Link-up: friendly and fat-free

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A school where kids with special needs are not allowed. Really.

Please note that del Sol's program is not for children with learning, behavioral, or social/emotional difficulties, special needs, or for children that have been identified by parents, educators, or professionals as having too much difficulty, or would likely have difficulty, with 'fitting in' to traditional school environments and expectations....

The above is part of the description of the "del Sol experience," a private alternative school for grades PK-12 located in Manhattan Beach, California. Ironically, the first line of the page reads, "Del Sol is alive with a caring, supportive, 'possibilities' environment." Not so much. In fact, their no-special-needs stance is blatant and wholesale discrimination that violates the law.

The wonderful Michele Shusterman, mom of a daughter with cerebral palsy and a disability advocate, shared this outrage on her CP Daily Living Facebook page, and plans on writing the Department of Justice.

Oh, and just in case parents of kids with special needs don't get the message, the Admissions Information page contains this "Important Note" at the end of the page: "Except for cases where special educational needs exist due to learning problems/disabilities, enrolling one child and not others is not in keeping with our mission." How downright open-minded of them!

The discrimination seems to be ongoing at del Sol. As an anonymous parent noted in a comment on greatschools.org dated June 13, 2014, "This school will not even consider applications from children with disabilities, including autism, mobility issues, etc. The claim that it will fundamentally alter the program allows it to skirt ADA compliance. At the same time, this discrimination is just wrong."

Are we living in 1950 or 2015?!

The school is tiny, and seems to have less than 50 students—but that is no excuse. Private schools (excluding religions ones) are considered a public entity, as defined by The Americans with Disabilities Act. Although some schools use the "undue burden" loophole to get out of inclusion, "Claiming undue burden does not receive a public entity of all obligation," points out the nonprofit PACER (Parent Advocacy Coalition for Educational Rights). "They must still provide program access through means that would not result in a fundamental alteration or undue financial or administrative burden."

In any case, what's particularly shocking about del Sol is how unabashedly the school displays its discrimination. They present their no-special-needs policy matter of factly—the same way other schools might state that, say, students are not allowed to bring foods containing nuts.

What kind of message are they sending students and their parents about kids with special needs? What kind of message are they sending anyone who reads or hears about their policies?

Although it's rare for a school to be this openly discriminatory, Michele and I both hear stories all the time about parents of kids with special needs struggling to get their kids enrolled, involved and included. Max has long been in a dedicated school for kids with special needs, but we've encountered resistance getting him into camps and programs (including this maddening incident).

Last year, Michele pulled her daughter out of a private school that refused to install (or even let her and her husband pay for) a child-height bathroom grab bar. "I still can't believe it happened," says Michele. "She was there for three years! The principal had this idea—or tried to hide behind it—that a grab bar that meets ADA requirements for adults meant that they were in compliance with the law. She said if they allowed this exception for my child, they would have to do it for others. What the hell was I supposed to do with this level of ignorance?! She was adamant she was correct because their building contractor told them so. I said, 'Even if this was accurate, this approaching and thinking is so wrong on so many levels.'"

After exhaustive attempts to deal with the school board, Michele and her husband decided the school was no place for their child. When the principal noted that they "loved" her daughter, recalls Michele, "I responded, 'If you even cared in the least about my child, you would be concerned about her safety, well-being and comfort in meeting on of the most basic human needs.'"

This week the news came out that the Obama administration would be issuing guidelines to states, school districts and early childhood providers urging them to include preschoolers in mainstream early learning programs. This is groundbreaking, and heartening to those of us who have kids with special needs. But the truth is that no Department of Education initiative is going to change people with the del Sol attitude.

Sometimes, parents have the law behind us. Sometimes, in the best interest of our children, we have to stop fighting the good fight and move on to other options or solutions. But at the very least, we owe it to our kids—and ones like them—to call people on their exclusionary, discriminatory and just plain wrong mindsets about children with special needs.

If you would like to share your thoughts on del Sol's exclusionary policy with the school, the principal is Richard Sharp and his email is rick@delsolschool.org

UPDATE

On September 20, I and several people who emailed Rick Sharp received the following response from him in regard to the exclusionary policies on the school website: 

I regret that you have been distressed by the content of our website. I also regret that that information is ON our site. It is very old information which is not consistent with our practices. I didn't even remember it was there until my daughter pointed it out to me at the beginning of this school year.

I would like you to know that we presently have 6 children with diagnosed ADHD, two with diagnosed anxiety disorders, two with ODD diagnosis, one with apraxia and several with dyslexia. In the last 5 years we have also had a child with bi-polar disorder who frequently attacked other children and teachers physically (she was with us for 3 years before her parents and the school agreed that she needed more help than we were able to give), and one with profound hearing loss (who withdrew after we used microphones on her 3 teachers, but the environment had too much outside noise for them to be effective). As you can see, the paragraph you are siting is not reflective of our policies.

It is my intention to remove the paragraph as soon as I can figure out how to do it. We are a small school. I have to do as much of the work as I can.

Image source: Flickr/Rick Shinozaki

Don't worry about a thing

Lately, Max likes to have a dance party in his room before he goes to sleep. It's one part fun, one part bedtime procrastination. We all join in, and he likes to ask if the baby is dancing, too. "Yes!" I tell him.

Dave is the DJ, and Rhapsody is our beat. We play anything Katy Perry, "Sugar" by Maroon 5 (which Max loves), "It's Raining Sunshine" (a longtime fave) and that world-famous song "Fire truck! Fire truck! I want to ride on a fire truck!"

The other night, Max and Dave surprised me. Dave put on Bob Marley's "Three Little Birds" and he and Max sang most of it.

Hearing Max sing "Don't worry about a thing, cause every little thing gonna be alright!" is better than any therapy session I could ever do over latent anxiety about him.

Once again, I will say: Oh, if those doomsaying doctors in the NICU could see him now.

You never know how things will turn out (why am I so surprised)

So, off we went to the temple yesterday morning to celebrate the first day of the Jewish New Year, with high hopes for the inaugural special needs service. It didn't turn out as I expected, and neither did what followed.

I will just say, again, that I was incredibly grateful the congregation offered any services at all for families of kids with special needs. This is still relatively uncommon in our area (and, from what I hear, at places of worship of all denominations around the country). I'd been talking it up to Max and, true to form, yesterday morning he informed me that he wasn't going. Sometimes, he likes to play hard to get. So then we talked and talked and talked about it and he and Dave talked and talked and talked about it and then he agreed to attend. I suspect Dave might have bribed him with the promise of yet another visit to our local fire station.

There were four families there. The rabbi leading the service, the Director of Education and Youth Programming, started off by reading a book about the New Year. She asked a few questions as she read, but Max tuned out. He was truly engaged by the next activity, though: We stood up and threw our "sins" and mistakes, using fake paper bread, into a fake paper river (the custom is you toss bread into a real river or other body of water). Max didn't have any mistakes to proclaim but Sabrina's made me do an invisible fist pump; she apologized for the times when she doesn't listen to me. Huzzah!

Then the rabbi read another book, at which point Max wanted out of there. He generally needs to be truly engaged in an activity for it to have meaning for him. Picking up basic ideas about religion from a book being read out loud in a roomful of people isn't going to happen.

I thanked the rabbi afterward for running the service. When I noted that Max had lost focus, she said, "That's OK!" Actually, though, I wasn't apologizing. I said I'd love to email her some thoughts, and I will. It seems like the kids would benefit from a more active and engaging session. I do not want to seem at all ungrateful because I feel just the opposite, but if the congregation is going to do this sort of program, it should speak to the audience.

And then, a surprise: Max headed into another activity. It was for second and third graders, but he didn't care. They were doing skits about when it's OK to laugh and when it isn't. In the first skit, a teacher asked a girl what she did during the summer and when she struggled to answer, another kid laughed. A discussion followed about why it was mean of the student to laugh. In the next skit, a fortuneteller predicted that a chicken would poop on a girl. The girl visited a farm and, sure enough, a chicken pooped on her. Everyone cracked up, including Max. The incident, the kids agreed, was embarrassing but as long as the girl who'd been pooped on was laughing at herself, it was OK to join in.

Max could not have been more engaged or entertained. So there you go: A non special-needs activity roped him in. This wasn't something that would have happened last year. Max's comprehension and willingness to try new experiences has really expanded.

Afterward, he wandered around the temple. We said hello to some people. He ate some challah. The rabbi gave him a big "Hello!" He generally seemed content. Sabrina, meanwhile, got to attend another kid service with friends and really enjoyed it.

Today, we return for the second day of the holiday. The next special needs service happens next week. I'm feeling this is a great—and heartening—start to the New Year.

Including kids with special needs in religion: Where there's a will, there's a way

I've never given up on the idea of finding special needs programming for Max at a congregation. Although we've been at one for the past few years that has been very welcoming and Max feels comfortable there, I still wished to find services that would engage him.

Today is the first day of the Jewish New Year. And we are going to a dedicated special needs service at the same temple we fled years ago because they weren't open-minded to doing programming. And I am so excited.

Three years ago, I wrote about my extreme disappointment with this temple. After I inquired about the possibility of starting a service for children with special needs, I was frustrated to get an email from the head of community noting "I want to be clear that I am not sure what I can provide in light of the financial difficulties facing synagogues." Not exactly a conversation starter. The rabbi offered to send me to a summit on building an inclusive community. It seemed to me that I shouldn't be the one and only person to spearhead the effort.

That no-can-do attitude was the main reason we quit that temple. We found another local one that offered services for children with autism and decided to try it. But there were throngs of people milling around, and Max was too intimated to even walk through the doors. The following year, we went to a place of worship housed in a former home. Max seemed content. Sabrina knew kids from her school and Dave and I knew some of the parents. They had great holiday activities for children, and although Max didn't participate he didn't mind being there.

Then a friend told me about the new rabbi at the temple we had left. He's a great, open-minded guy, she said. Get in touch. So I did. I shared the post I'd written about our previous experiences. When we spoke on the phone, I pointed out that starting a program didn't have to cost much at all, and noted that surely someone in the congregation would have experience working with kids with special needs. He said he'd see what he could do. I confirmed that some positions (including the "head of community") would be turning over during the summer.

We met the rabbi in person at a fair over the summer and he was exceptionally warm. He invited us to experience the holidays at the temple. A couple of weeks ago, I emailed him to see if he had suggestions for a pro who would do a bris (circumcision) for the baby, and whether we might be able to use the small, beautiful chapel.

He gave me a list of people. He welcomed us to use the space. Then he told me that, following our conversation, he'd worked hard to add a new program to the High Holiday offerings: a service for families and children with unique needs and challenges called "B'Yachad" (translation: together). It would consist of activities and crafts, led by the Director of Education. It sounded right up Max's alley.

I had tears in my eyes when I read that. I am not underestimating the amount of work involved in putting together a program but still, it is not like building the Wailing Wall. Mainly, it starts with clergy who understand that kids with special needs may need extra accommodations at places of worship, and who are willing to make it happen.

That's where we will be today. I hope Max is into it but no matter what, I am glad for the opportunity, both for Max and kids like him.

The High Holidays run from the two days of Rosh Hashanah (the Jewish New Year) to Yom Kippur (the Day of Atonement). The days in between are known as the Ten Days of Penitence, a time seen as an opportunity for change.

I hope religious leaders across the country will use this period of contemplation to consider what their own congregations could be doing to welcome children with special needs. I can think of few better ways to do right by God.

Image source: Flickr/Robin

The Special Needs Blogger Weekend Link-up is here for you

What to do if you're new here

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

Like this: Love That Max: The girl who can't be forgotten

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. 

The girl who can't be forgotten

In some ways, it's hard to believe that tomorrow is 14 years since 9/11. Victims' names will be read aloud at the 9/11 Memorial in New York City, as has become a tradition. The business day will carry on, as usual; major events will take place, including New York Fashion Week. The tragedy remains most traumatic, of course, for people who lost family and friends, those who escaped with their lives and the firefighters, police officers, relief workers and others who flocked to the scene to help.

I don't have a personal connection with anyone who died on 9/11, not that I know of. But I have vowed to remember one young woman, Melissa Renee Vincent, 28. Two years ago, still haunted by the sight of the flyers with her face that were plastered all over Hoboken, NJ, where she and I lived, I figured out her identity and promised to never forget her.  

It is still hard to wrap my head around 9/11, the defining tragedy of my lifetime. So I focus on this young woman, a resources manager for a financial company on the 102nd floor of 1 World Trade Center who had, by all accounts, a radiant smile and soul. It seemed like we could have been friends, something other strangers seem to have experienced. Someone recently left this comment on the post I first wrote about her:

I just felt my heart break into a million pieces and heal back together again. In 2001, I was a young professional who had just been transferred to my company's Manhattan office. I moved to Jersey City on Labor Day weekend, and started my new position on Tuesday, September 4th.

I wasn't there long enough to have made friends. Maybe that's a blessing. Melissa Vincent became the face of 9/11 for me, the "friend I never had" is exactly how I described her. Her face on flyers posted around Hoboken that I would see when I would go to Pier A to grieve in the weeks following when my office was shut down. Her father's face of raw pain on my TV screen. 

I recently went to New York for the first time since the memorial opened this summer, and made a rubbing of Melissa's name on the memorial. My daughter asked me if I knew her, and I told her no, but she was just the kind of person I would have been friends with, and just as easily could have been me.

Thank you for sharing this.

And then, last night, someone added this:

Your comments are so beautiful and you articulated exactly how I've felt about Melissa Vincent for the past 14 years. For me, she was the face of 9/11. She was, as you said, the "friend I never had." I remembered her father and his pleas on CNN when he thought she was missing, as well as the fliers around NYC with her picture. I could relate to her and she seemed like someone I would know and like. I also visited the 9/11 Memorial this past Spring and found her name and traced it with my fingers. I am so sorry for her family and friends who have had to deal with this tragic loss. I grieve for someone I never knew.

I haven't yet had an in-depth discussion with the kids about 9/11. When I do, I will tell them about Melissa. When we someday visit the memorial as a family we, too, can do a rubbing of her name. 

I do not want my recall of the victims to grow fuzzier and softer, because Melissa and the 2,976 others who passed deserve to be kept alive in memory. Their family and friends deserve that, too.  

And so, Melissa Renee Vincent, I am once again thinking of you...as are many. 

An amazing sight at New York Fashion Week

The FTL MODA show happening Sunday at New York Fashion Week is going to look different from others in a really beautiful way, and I'm not talking about the clothing. Self-described bionic model Rebekah Marine will be strutting her stuff along with Madeline Stuart, the teen model with Down syndrome. The Italian company, which has designed clothes for Lady Gaga and Beyoncé, paired with the Christopher & Dana Reeve Foundation and Global Disability Inclusion to feature models with disabilities.

Last September, Karen Crespo became the first quadruple amputee with prosthetic limbs to walk the runway, at Carrie Hammer's New York show.

Along with eye-catching outfits, Rebekah, 28—born without a right forearm—will be wearing one of the most high-tech prosthetic hands available. She began modeling four years ago, and has been featured in Nordstrom's 2015 anniversary catalog, along with magazines and newspapers. The West Deptford, PA, resident is also an ambassador for the Lucky Fin Project, a non-profit that raises awareness for those with upper-limb differences.

Rebekah considers her bionic hand "a great conversation piece." As she told me, "People aren't so afraid to ask questions about my arm anymore. I remember being at a concert and the guitarist of one of the headline bands approached me and said that is the coolest prosthetic hand he'd ever seen in his life. I thought, 'Is this really happening?!'"

Attitudes and acceptance have come along since the days when she was a kid and wanted to be a model. When her mom took her agencies, she told People, "It didn't go very well, of course, when casting agents noted my disability. Hearing the words 'You'll never have a future in the business' really hit me hard." Getting her i-limb quantum, made by Touch Bionic, has inspired her to get out there and get gigs.

One day, she continues, "Hopefully I won't be considered a 'disabled' model, just a model. But I don't mind the tagline 'bionic model' so much. It's what makes me special, and I'm proud of it. For now, it works."

When I asked what advice she has for parents raising kids with disabilities, this is what she had to say: "Parents should always encourage their kids to reach for the stars, as clichéd as that sounds. I never thought in a million years I'd model for fashion giant Nordstrom or walk the runway for the biggest fashion show in the world. My parents always told me I can pursue anything I wanted and become successful at it if I tried hard enough. I thank both my mom and dad for always believing in me."

Images of Marine: SleeperAwake; image of Crespo: screen grab/Vimeo

A new way to fuel an obsession

"Child will start texting" isn't a milestone you'd read about in any of the childrearing books, but these days it's a common one. Sabrina started at around age 9. And now, Max has discovered the allure of texting from Dave's phone—yet one more way he can express his enthusiasm for all things fire trucks.

He and Dave did a boys' trip to the Jersey shore this weekend. The first text I got was from Max, related to his determination to ride on his favorite fire truck in a parade:

Over the course of the weekend, Max reminded me several times he'd be a firefighter when he grew up. He kept me in the loop when he visited his usual favorite fire stations, and when they found a new one to explore. 

It was a whole new way to experience his obsession. Because I for sure don't hear enough about it when we're together, given that he only talks about fire trucks approximately every 15 minutes. Although, hmmm, this could further encourage spelling. And at least he isn't regularly texting me about clothing he wants to buy like SOME girls I know. And he hasn't (yet) started texting me about mac 'n cheese or that he would like a fire truck bowling birthday party. And then, there's this. Swoon.

The Special Needs Blogger Weekend Link-up: A fine excuse to ignore your family

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: This world needs to hear his song

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. 

This world needs to hear his song

People are sometimes surprised that Max can sing, given his challenges with talking. As with his speech, maybe it doesn't sound typical but then, typical is in the eye of the beholder. He really enjoys it, especially when he makes up songs about favorite things and activities including fire trucks, going to camp, bowling, fire trucks, Disney Cruises, fire trucks and fire trucks. Did I mention fire trucks?

I've found a music teacher to help him prepare for his bar mitzvah ceremony, which I am putting together based more on what's meaningful to Max than tradition. They'll be creating lyrics for a song he'll sing as she plays guitar (sung to the tune of his favorite YouTube video, "Fire truck! Fire truck! I want to ride in a fire truck!" and I am NOT responsible if you listen to it and you can't get it out of your head). She's also teaching him to sing a prayer, along with a welcome song, Uri Uri. Oh, how I love the refrain:

Cause you've got the music in your soul
This world needs to hear your song

They sure do—and understand that his singing is as beautiful as any child's.

I was thinking about this after a recent session with Max's music therapist when they sang "When You Wish Upon a Star." Max loves it because it reminds him of being on a Disney Cruise (that's one of the melodies the horns play). I like it, too, and I am not a person who's typically into syrupy songs. I still remember seeing Pinocchio for the first time as a kid, so I get a sentimental when I hear it. It also has special meaning as the parent of a kid with disabilities because I have many wishes for Max.

I watched his rendition and oh, my heart. (Skip ahead to minute 1:00 if you don't care to hear Max communicate to Amanda that he is going on the Disney Magic, which he is not.) The video may not be safe for work if this song makes you misty-eyed, too. Maybe it's just the pregnancy hormones. Or not.

Those back-to-school blues and woo hoos

I see the photos everywhere on Facebook, kids holding up those "First day of ___ grade!" signs. I marvel at how big my friends' kids are getting. And I get the occasional twinge about Max and the different life he leads than other kids. "What grade is he in?" people often ask, and I explain that Max's school doesn't go by grades.

OK, not that I can get it together enough this time of year to have either of my kids holding up a back-to-school sign, although I always do capture them standing on our front porch. But when I see those photos, they are a reminder of the different life Max leads. He'll be returning to a school for kids with special needs where he will learn, along with reading and math, how to use both hands and basic life skills such as making conversation.

I am very aware of these twinges—they're unsettling. Because otherwise, I could not feel more content with who Max is.

I had a bad case of comparison-itis when Max was little. Facebook wasn't around back then, but there were all those kiddie birthday parties to attend and parks to visit. It was a time when Max's development was a big unknown, and my anxiety was great about what the future held for him—a bad combination for my mental well being. I continuously looked to other kids to make sure Max wasn't lagging too far behind. It took a long time for me to accept that he was on his own timeline, and all that matters was that he continued to make progress.

These days, I hardly ever compare Max to his peers, in person or otherwise. My friends' social media or emailed photos of their kids don't usually make me consider the differences between them and Max—I'm happy to see them. Yet these back-to-school photos of kids holding up those signs, for whatever reason, give me pause.

Mostly, I am revved for the new school year. Max, he can't wait to return to school, so much so that Sabrina says things to him such as, "Max, don't you like summer vacation?" I have great enthusiasm and hopes; Max is more excited than ever about learning and more focused, too. His comprehension has grown. Who knows what amazing stuff he will accomplish. Also, I love clothes shopping for him for winter. Sabrina picks out her own stuff, but Max could care less and so I get to choose the cozy knits, striped rugby shirts and khakis he will look so handsome in.

Some comparing, it seems, is inevitable. When I put on my thinking cap, as my third grade teacher used to tell us to do, I realize that these twinges I feel when I see those photos on Facebook aren't any reflection of my pride for Max. They are passing blips, and nothing more.

Image source: Etsy/Storybook Soiree

Who is this kid?

Dave took the kids swimming this weekend while we were on a getaway. I walked into the pool area to find Max repeatedly dunking himself underwater and jumping up again.

"Who is this boy?!" I laughingly asked Dave, a running joke between us. I was in awe.

Max used to be the kid who was afraid of water, let alone going under it, let alone trying to swim. He can do a pretty decent dead man's float now, and he's trying his best to paddle and kick. In the ocean, he boldly walks right into the crashing waves.

It's not that I doubted Max could get used to the water. It's not that I've ever been skeptical of his potential, because he is full of it. It's that once you've had a child who couldn't do something for a long time, and the ability is hard won, you never stop being appreciative or marveling. And it isn't just the biggies, like walking or talking or learning to read. It's the small stuff too.

Like when we were at a restaurant recently and Max was watching YouTube on Dave's iPhone and he asked if it was too loud. He's never cared before. "Who is this kid?" Dave said.

Like when Max, Sabrina and I were in the living room the other night. Max tends to conk out first; Sabrina is a night owl like me. Suddenly, we heard the toilet flushing upstairs and we all looked at each other and grinned. Max has gotten relatively independent with toileting, but getting out of bed and going by himself isn't usual.

Who is this kid?