Friday, July 29, 2016

The Special Needs Blogger Weekend Link-up is back!


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: 20 wishes for my child with special needs

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, July 27, 2016

20 wishes for my child with special needs



1. I wish for you to be happy, now and forever.

2. I wish for you to have a full life, too. People often remark "As long as he's happy!" yet I also hope that you enjoy a wide gamut of experiences and interests. (Other than watching certain YouTube videos 47 times in a row.)

3. I wish for you to always be surrounded by people who know, respect and admire your abilities.

4. I wish for you to keep rocking your timeline. You've taught me that inchstones are every bit as amazing as milestones, and that progress at any pace is progress to be celebrated. 

5. I wish that as you get older, including people of all abilities in mainstream activities and programs is increasingly typical.

6. I wish for you to have the resources to max out your potential....along with plenty of motivating chocolate ice-cream.

7. I wish for you to show all the people that disability is just one part of who someone is, not the whole.  

8. I wish for you to someday be your own advocate. But in the meantime, buddy, I am here to do the job. 

9. I wish for you to hold onto your delight in life's big and small wonders; a lot of us adults could use that enthusiasm. 

10. I wish you the best team of doctors, specialists and therapists. And I wish you never have to deal with insurance company incompetency but DON'T GET ME STARTED. 

11. I wish for technology to continue to expand your world, including in ways people haven't even dreamed are possible. 

12. I wish you evolving independence, and lots of it. (That's a wish for me, too.)

13. I wish for you to keep outgrowing the sensory challenges and pushing past them when you can. Especially the kicking of airplane seats, table legs and sofa bottoms. (Yep, also a wish for me.)

14. I wish for you to someday have a satisfying job. I used to worry that you wouldn't grow up to be, say, the president. But, heck, how many people are president? I hope that you find work that is meaningful and interesting, and that the opportunities and equal pay are there for you. Alternately, I hope you win the lottery and can regularly lounge around a large pool as you're served chocolate ice-cream.

15. I wish for you to keep working that killer smile. Oh, and I wish you eternal good hair.  

16. I wish for you to never feel self-conscious about your disability or differences. 

17. And I do wish that you are aware of having a disability, because it would mean that you have that level of cognition. And I hope you have the confidence to be proud of all that you are and all that you have achieved.  

18. I wish that should you someday notice people staring, you wonder what their problem is. Because there is something wrong with them, not you. *Unless they are gaping at your fabulous hair.  

19. I wish for you to keep proving the doom-saying doctors wrong. 

20. I wish for you to know and feel how tremendously proud I am of you. Not because of how far you've come, but because of who you've always been: My beautiful, bright, capable, awesome child. 

Image: Flickr/Dan Zen

Tuesday, July 26, 2016

Katy Perry and Staples team up to help teachers and kids


Teachers get a break during summer—not just being out of school, but on having to blow bucks on supplies. An estimated 99.5% of teachers use their own money to equip their classrooms, per a survey from the Education Market Association, at a cost of more than $400 a year.

Over the years, Max's teachers have purchased items to help and motivate him, everything from firefighter stickers to ties for his jacket zippers to make them easier to pull. I've never asked but I assume they have spent their own money. Friends who are teachers don't think twice about digging into their wallets to get stuff for the kids they teach; it comes with the territory. Troubling, isn't it, that some of this country's most valuable employees do not have an expense account.

Enter Katy Perry and Staples, sponsor of this post. The superstar and the superstore have teamed up to inspire people to donate to classrooms. During back-to-school season, Staples is donating one million dollars to DonorsChoose.org, the charity that funds classroom projects and has had an impact on more than 18 million students nationwide.

People can make their own donations at Staples (as little as $1) or at StaplesForStudents.com. As Perry says, "I believe in education as a foundation for a great life, so I want to make sure students across the country are inspired by their teachers and afforded every opportunity to realize their dreams."

Here's the scoop from Perry in a new PSA:

 

Sweepstakes for a scholarship and Katy Perry meet-up! (Which is better?!)

Through September 10, customers who spend $25 or more in Staples can use a unique entry code on their receipt to enter a sweepstakes online at StaplesForStudents.com. The grand prize winner will score a $50,000 scholarship, plus a trip for two to Los Angeles to meet Katy Perry. Four first prize winners and one guest each will also win air travel to L.A., a two-night stay and spending money to meet Perry at the VIP Winners Celebration.

The Staples for Students campaign is an ongoing education booster; initiatives have included school supply drives, donations for education projects, Designed by Students and sales of products that give back to classrooms and communities in need.

Now, Staples, if you could just do something about kids *who shall remain nameless* who wait till your local store is nearly closed to announce that they need supplies for a project due tomorrow.

This post was sponsored by Staples; opinions are my own. 

Image: Screen grab, Staples video

Monday, July 25, 2016

Making new baby memories


Last week, Dave and I did something that was fun, fattening and healing: We took Ben to the same place we'd visited the summer when Max was a baby.

Max and Sabrina were away at camp, so we had Ben to ourselves. I'd planned a trip to the Berkshires in Massachusetts. Thirteen summers ago (!!!), a colleague had kindly loaned us her home in the area. Some parts of Max's babyhood are a blur but I vividly recall that vacation. Not so much what we did, but how Dave and I felt.

Max was eight months old. He was smiley and sweet and not yet sitting up or doing much in the way of motor skills. Dave and I were besides ourselves with anxiety. We tried so hard to be happy that vacation and to enjoy Max, away from all the doctor visits and therapies and endless conversations about his delays. We wanted to be like any parents on a getaway with a baby.


We walked Max around Stockbridge and Lenox, tried various restaurants, visited the Norman Rockwell Museum and the Berkshire Botanical Gardens. Max's vision was still righting itself after the stroke and he wasn't taking in much of his surroundings. I dangled him over flowers, hoping that they might catch his eye.

One night, we headed to Tanglewood, the summer home of the Boston Symphony Orchestra. It's an outdoor venue with a hall and shed for concerts and a glorious lawn where people picnic and listen to the music. My parents had introduced me to Tanglewood, and I was excited to take Max. It's amazing to lie there in the dark and listen to the music.

I carried Max around in a Baby Bjorn at Tanglewood. "You need to feed that baby more!" a man joked, because Max was quite the chubster. Oh, if only he knew, I thought. Feeding Max was a challenge. He had oral-motor issues, and spit out a lot of what we spooned in; we traveled with rolls of paper towels.


There were other parents picnicking with babies at Tanglewood. I remember watching those families and feeling sad that try as we might, we couldn't be as carefree.

So there we were in the Berkshires with Ben. The towns had changed—there were more fancy restaurants and coffee shops—but still had the same charm. Dave and I had changed a lot, too. We were no longer those depressed, worried parents.

We contentedly wheeled Ben up and down streets, visited the Norman Rockwell Museum and the Berkshire Botanical Gardens where a sheep baaa-ed at Ben and made him cry. We ate a lot of great food, including ice-cream for breakfast at SoCo in Great Barrington. At the Haven café in Lenox, a couple with a tot approached us and asked about stuff to do with a baby. It gave me a flash of pleasure. Because now, we were that carefree couple with a baby.

Late one afternoon, we bought a picnic dinner at the supermarket and headed to Tanglewood for  some Mozart Magic Flute and Debussy. We settled onto our blanket and nibbled on cheese. I watched Ben rock back and forth on his hands and knees, on the verge of crawling. I gave him bits of fruit. People around us smiled at him.


"I don't think we enjoyed Sabrina as a baby as much as we could have because we were so worried about Max," Dave said, and it was true.

We were savoring the parenthood we'd never had.



Friday, July 22, 2016

The Special Needs 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 best big brother

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, July 21, 2016

#LiveUnlimited: What every kid and adult with a disability deserves


Last week, I visited a unique camp in Illinois that had typical campers. The kids did archery and arts and crafts; went swimming, fishing, canoeing and horseback riding; played water sports; danced around; sang camp songs; ate tacos and teased the counselors and visitors.

The camp is unique because it's a Muscular Dystrophy Association (MDA) camp in Illinois; all 45 campers have some form of muscular dystrophy or a related disease that takes away physical strength and mobility. And yet, they seemed like any kids and teens at any camp, enjoying themselves and having a whole lot of fun. Some used wheelchairs, some walked or talked a little slowly, some required use of a ventilator—but they were kids being kids, living it up.

That's exactly the point of Live Unlimited, a six-week campaign recently launched by MDA that encourages us all to get past the "cant's," inspired by MDA families who do that every single day. It's what we strive for as parents of kids with special needs. Despite the physical and societal challenges diseases like muscular dystrophy and disorders like cerebral palsy (which Max has) can create, our kids push past their limits and show the world that their disorders do not define them.


MDA exists to give individuals and their families strength and independence, with funding going toward research, care, services and support. What better way to empower kids than through camp?

The non-profit runs close to 75 week-long camps around the country for kids ages 6 to 17.
This summer alone it is hosting nearly 4,000 campers, with the goal of giving kids with limited muscle strength and mobility an environment without barriers. Besides enjoying a wide variety of activities, kids make friends and build self-confidence and independence. It costs MDA about $2000 to host each camper, but thanks to generous donations, families pay nothing (they can apply through their local MDA office).

I visited the camp on a blogger trip sponsored by MDA and spearheaded by the awesome and indefatigable Christine Koh of Boston Mamas. I got to hang out with a group of super-cute kids ages 6 to 10, one of whom took great delight in shooting his whirly toy at me. Ya know, like any six-year-old.

From left: Vera SweeneyWendi Aarons (back), Audrey McLelland (front), Jessica Ashley, Christine Koh and me. Also on our trip: Jen Reeves
The week had an Olympics theme. We arrived on Greek day, hence the toga-and-wreath-wearing counselors we spotted at breakfast.

The counselors—all volunteers—include occupational therapists, medical students and students going for a degree in child development. There's also a professional nursing staff on hand.

Max has the same kind of foot braces; hers had a cool under-the-sea theme.
There are dozens of kinds of neuromuscular diseases, with nine major forms of muscular dystrophy alone. Duchenne muscular dystrophy is the most common one in children, typically caused by a genetic mutation on the mother's side. It usually crops up between ages three and five, mainly affecting boys. I met two different pairs of sibling brothers at camp. During lunchtime, one stopped by our lunch table to give his younger bro a hug.

At mealtimes, both counselors and kids fill out "Yes notes" for a job well done. 
Duchenne muscular dystrophy is progressive; muscles weaken over time. It starts in the hips, pelvic area, thighs and shoulders, then moves on to muscles in the arms, legs and trunk. Children with DMD tend to start using wheelchairs between 7 and 12 years old. Heart and lung muscles are often affected by the early teens.

At camp, kids enjoy freedom they don't usually experience at home. As I know from raising a child with special needs, real life is filled with therapy, treatments and medical appointments. There may be scheduled activities at camp, but everything proceeds at a leisurely pace and the focus is on f-u-n. Meanwhile, parents also get a break. Some children with MD need to be turned over every two hours, so their muscles don't stiffen up overnight. At camp, counselors do the job.

The nursing staff doles out meds at mealtime
The camp is flat and easy to navigate. I watched one boy in a power wheelchair gleefully go off the path as we headed to archery, telling his counselor he could handle the grassy terrain no problem (he did). Meanwhile, fellow campers were plotting how to steal counselors' name tags; if that happens, the counselors are forced to do a dance in front of everyone at lunch to get back the tags.

Targets unlimited: First he tried the adaptive archery bow. Then he tried the regular bow. Last, he tried a BB gun.
Water games unlimited: The entire point seemed to be, get the counselors as wet as possible.

Fishing unlimited

Chilling unlimited

Canoeing unlimited 
Hopscotch unlimited—by foot or by wheelchair

Swimming unlimited: A ramp makes the pool accessible to all. There is a waterproof wheelchair, too.

Supersoakers unlimited: The girl spraying water at staffers was fondly known as the camp "firecracker."

Floating unlimited

Blowing bubbles unlimited: It's fun and therapeutic (muscular dystrophy can make breathing difficult). 
The staff couldn't have been more exuberant, warm and caring toward the kids. During mealtime, counselors sang songs at the top of their lungs, clapped and roared. I asked one boy what his favorite activities were. "Breakfast and the firefighters," he declared. On the first day of camp, kids are welcomed by local firefighters (longtime MDA sponsors through the International Association of Fire Fighters) and their trucks and Harley Davidson (also a longtime MDA sponsor) riders with their bikes.

 As we finished lunch, an Emergency Dance Party happened

Tori has been a counselor at camp for several years; several members of her family volunteer as well. I also met a woman who's been a counselor for 19 years. Another counselor had once been a camper herself.  
After lunch, the kids rested in their bunks. Later on in the day, they'd participate in a Lowe's-sponsored activity in which they created floats from styrofoam then raced on them. There was also a night swim. And to be sure, more fun and singing and "Yes notes" at dinner.


At the start of the day, I'd been talking with a camp staffer about muscular dystrophy. She told me that the average life span of a person with Duchenne muscular dystrophy is 30 years old, although there are cases of men living into their 40s and 50s. We were in the dining hall when she said that, and as I looked around at the campers' happy faces, I choked up.

As the day went on, though, I was continuously reminded what I've learned from raising Max: Kids live and love the life they've got. They don't know any differently.

It's our jobs as parents, family, loved ones and Adults Who Care to help them achieve the most boundless existence possible.


Ways to support these kids and the Muscular Dystrophy Association

Wear your spirit.


Max and I each received one of these leather Live Unlimited bracelets, from Endorphin Warrior. For every $22 bracelet sold, $6 goes directly to MDA to help kids like the ones I hung out with at camp.

Create a #LiveUnlimited image, rack up donations to MDA  

Go to MDA #LiveUnlimited to create a #LiveUnlimited image; you can either upload a photo or just choose a background image (it takes about 10 seconds) that shows how you live unlimited. Until July 31, for every image created, sponsors will donate $5 to help kids and adults with muscular dystrophy, up to $30,000.

I went with Max's most recent #LiveUnlimited accomplishment: tap dance lessons.


Our trip was hosted by the Muscular Dystrophy Association. 

Wednesday, July 20, 2016

The best big brother


Ben is lucky to have a big brother and a big sister who dote on him. Now that Sabrina is away at camp, Max has been the sibling in charge, and he is owning it. He's taken to calling himself "The best big brother."

Reunited on visiting day
Max, Ben and I were up at the crack of dawn the other day. As usual, Ben had a bottle, hung out in the Jumperoo, ate breakfast, then chilled in the highchair. Max downed an oatmeal sundae consisting of oatmeal made with heavy cream, mashed banana and whipped cream on top. (No judgment, the doc says Max needs to gain weight).

I made myself iced coffee while Ben and Max played. As Ben dropped his toys off the side of the chair (a charming new pastime), Max picked them up and said, "Nooooo, Baby Ben!" which didn't help. Still, it was cool to have Max practice grasping—that's me, always looking for the OT opps.


Even better, he grabbed Ben's pink dino and started squeezing it, excellent fine-motor skill practice.

We sang the itsy-bitsy spider to Ben together (I'm always looking for speech opps, too). We played peek-a-boo, peering at Ben from behind the pantry cabinet door.


Max has always been an affectionate boy, and it's seriously sweet to see him loving on Ben. But I especially appreciate the confidence boost that taking care of Ben gives him. "I'm your big brother!" he regularly reminds Ben. And Ben knows it.


Tuesday, July 19, 2016

Raising kids who are independent, job-ready and generally rock



This guest post is from writer and activist Cara Liebowitz. Smart, sharp and funny, she blogs at That Crazy Crippled Chick and recently started an internship at Disability Project Empower. It's a nonprofit aimed at offering young people with disabilities job training and mentoring. As you may know, the most recently tracked unemployment rate for people with disability in the U.S. is 12.5 percent—nearly double that of people without a disability.


When I was being interviewed for my current internship, my future boss mentioned something that surprised him. “I’m a little surprised that someone with a Master’s degree is applying for this internship.” he commented. I was embarrassed. “I couldn’t find anything else.” I mumbled.

That was a hard admission to make. After all, I was 23 years old, with a bachelor’s degree in Education, a Master’s in Disability Studies, and a resume consisting of a laundry list of speaking gigs and published works. Isn’t that supposed to be the magic formula? We’re told that if we go to college and have a polished resume, we will achieve the modern American Dream of a good paying job, the family, the white picket fence, the whole nine yards.

Except it wasn’t working like that for me. In high school, I listened jealously as my peers secured the sort of minimum wage jobs that are typical for teenagers—retail, food service, lifeguarding. I knew that there was no way I’d have the coordination to fold clothes, work a cash register, or make sandwiches. (As I’m writing this, I’m reminded of a friend from high school who worked at Baskin- Robbins, and a disturbing image comes into my head of ice cream flying across the room if I attempted to do that job.) And though I’m a decent swimmer, the thought of me trying to save someone else is simultaneously hilarious and horrifying.

I didn’t earn a cent of my own money until after college, when I began blogging professionally. And it wasn’t until I began receiving SSI benefits a year ago that I was getting a steady income for the first time in my life. I was in my 20s and learning how to write a check, pay my credit card bill, and use an ATM. I felt ashamed and immature. What good was all the work I’d put in during college and grad school if I’d just become a stereotype, relying on government benefits for the rest of my life?

It was this desire for employment and independence that led me to uproot my entire life and move to Washington DC this summer for two months. I’m interning with two great organizations, 2Gether-International and RespectAbility, working to make sure youth with disabilities have as many opportunities as their peers—and that includes employment. I’m working on a great program with 2Gether-International that will allow youth with disabilities to pitch their own advocacy projects, and in the process, gain valuable employable skills like crowdfunding, networking, and team management.

The program, Disability Project Empower, will give youth with disabilities valuable skills that they can use in any employment setting, whether that’s a traditional office setting, self-employment, or a combination; check it out. We recently raised enough money to run the first five projects.

I’m extraordinarily lucky to have parents who have supported me in all my efforts. To their credit, they barely blinked an eye when I told them I wanted to move to DC for a summer, just told me to do the research and they’d help me out when the time came. I’m sure it wasn’t easy for them to let their youngest daughter, who is multiply disabled, move four hours away for two months. (It probably helped that I had gone away to college, so they were somewhat used to the idea of me being on my own.) Here are some tips for parents of kids with disabilities to enable independence, so that someday they’ll strike out on their own, like I have.

Teach them how to use public transportation.


I can’t stress this enough. So many youth with disabilities that are around my age just have their parents drive them everywhere, and they’ve never learned how to use trains, buses, cabs, or anything. For me, it helped that my family and I took the Long Island Railroad into Manhattan often when I was growing up, because my grandma lives there. When I was ready to do it on my own, it was familiar. Now, I take public buses and trains everywhere, and now that I’m in DC, it’s even easier, since all the Metro stations are equipped with elevators. I can’t tell you how thrilling it is to know that I can get anywhere I want to go. Obviously, it’s harder if you live in a rural area, but if public transportation in your area is accessible, give it a shot! Most areas also have segregated door to door paratransit for people with disabilities. It’s not ideal, but paratransit can be useful in limited circumstances.

Use all the technology.

It’s so much easier to get places now than when I was growing up. I use Google Maps to plan out the steps needed to get where I’m going, and Apple Maps to give me walking directions once I get there. Transit apps allow me to see when the next bus or train is coming and what stop I need to get off at. And technology allows me to keep in touch with my parents as well. If my mom is particularly nervous, she’ll ask me to text me at various steps in my journey (when I’m on the train, when I’m off the train, when I’m at work…).  That way, she knows where I am and can be assured that I’ve gotten where I’m going.

Teach life skills early.

I’ll never forget getting to college my freshman year and realizing I had no idea how to do my laundry. Luckily, my roommate was kind enough to show me how to sort my laundry and use the machines. Even if you don’t think your children have the physical or cognitive ability to do certain things, teach them anyway—before they need to do it on their own. Make any adaptations you need, and think outside of the box. For instance, instead of pouring detergent, which could be a disaster, I use detergent sheets.

Most of all….

Take baby steps.

When I first started taking the train into the city by myself, my mom would drive me to the train, wait with me on the platform until the train came, and then a friend would meet me at Penn Station and take the subway with me. When I went to the mall, my mom would go with me and we’d pick a place and a time to meet after we were done shopping on our own. Slowly, as we all got more confident, my parents allowed me to do more things on my own. Now I take the train and the subway by myself, and I go to the mall on the bus on my own.  It’s a process that took years, but it paid off.

Independence and employment aren’t easy when you have a disability, but with the right tools, everyone can be productive citizens. Big thanks to Ellen for having me write a guest post! I can’t wait to see how independent Max is when he gets to be my age!

Disability Project Empower recently reached its crowdfunded startup goal (yeah!) and is still accepting donations here.

Monday, July 18, 2016

Friday, July 15, 2016

The Special Needs Blogger Weekend Link-up: Your blog home away from home


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 boy who wasn't supposed to walk learns to tap dance

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, July 13, 2016

15 perplexing questions about special needs parenthood


2. When you send two bills to the insurance company in the same envelope and they claim they never received one of them, where exactly did it go? 

3. Do you invoke bad karma for regularly telling your child that the store/fire station/zoo/car wash/whatever place he is obsessed with is closed?

4. Those people who stare at your child: Did their parents never tell them it’s rude to stare?

5. When the specialist doc’s assistant informs you that she can fit your child into his schedule in five months, what part of "My child needs to see the doctor" did she not understand?

6. Isn't it time wine was served at IEPs?

7. When your child won’t stop kick-kick-kicking the airplane seat in front of him, is it so very wrong to pretend you don’t know him?

8. How unhealthy is it for a kid to swallow a little toothpaste every single time?

9. Can the therapists actually tell when you’re not doing all the exercises with your child that you’re supposed to be doing? (Also hypothetically.)

10. When people say things like “God only gives special children to special people,” is it fine to respond, “No se hablo inglés”?

11. How can a child with fine-motor skill challenges have issues picking up pencils and toys but no issues whatsoever manipulating the TV remote control?

12. Is it cool to give your child mac ’n cheese for lunch and dinner? And snack? All on the same day?

13. Relatives who refuse to acknowledge your child’s unique needs or accommodate them: WHAT IS WRONG WITH THEM?

14. How is it your child can sense just how badly you want him to stay calm at an event and proceed to have the worst meltdown ever?

15. Is it normal to wish, some days, that hiding under your covers would solve all the problems?

Tuesday, July 12, 2016

How wrong were the doctors about your child?


"We were told that my son would never sit upright. Now he walks, is really smart & sociable," read the tweet. It was in response to the video I put up about Max learning to tap dance.

I knew just what she meant. We called the pediatric neurologist and neonatologist at the hospital where Max was born Dr. Doom and Dr. Gloom. They only told us the worst about Max: That he might never walk or talk, and that he could have intellectual disability and hearing and vision problems. At one point, the neurologist told us we could sign a Do Not Resuscitate.

I've said it so many times: If only those NICU doctors could see Max now.

Technically, they weren't wrong about some stuff. He got cerebral palsy. He has intellectual disability. He doesn't talk the way a lot of people do.

But mostly, they were wrong.

Wrong, ethically, because they didn't give us a shred of hope. There was a young resident who talked to us about the plasticity of the brain—how new growth could spring up around the damage. He was our only consolation.

And those doctors were wrong because Max did go on to walk—on his own timeline, at age three. And Max can articulate words. And his vision and hearing are fine. And he has plenty of brightness and smarts, especially EI (Emotional Intelligence).

Not long ago, I read a letter that a mom of a little girl with Down syndrome wrote to the prenatal specialist who'd suggested that she abort her. As Courtney Baker posted on the Parker Myles Facebook page,

I'm not angry. I'm not bitter. I'm really just sad. I'm sad the tiny beating hearts you see every day don't fill you with perpetual awe.... I'm sad you were so very wrong to say a baby with Down syndrome would decrease our quality of life. And I'm heartbroken you might have said that to a mommy even today. But I'm mostly sad you'll never have the privilege of knowing my daughter, Emersyn... She's given us a purpose and a joy that is impossible to express. She's given us bigger smiles, more laughter and sweeter kisses than we've ever known. She's opened our eyes to true beauty and pure love. 

Those NICU doctors were wrong in one other key way: They were wrong not to tell us that we would adore and love Max, no matter what. That he would bring us so much happiness and pride. That even if he wasn't the child we'd dreamed of, he would be a great boy we could have never imagined.

Oh, yes, those NICU doctors were wrong.

Monday, July 11, 2016

The boy who wasn't supposed to walk learns to tap dance


So, this happened: Max is learning how to tap dance.

Let me just say, boyfriend has always had good rhythm and is really fond of dancing (not to mention stomping). People with disabilities have all kinds of abilities. I've gotten sensitive to the fact that sometimes we unnecessarily glorify them for various acts, and in doing so insinuate that they are not otherwise competent. So this rave is not about the fact that Max is capable of tap dancing.

But to this mom, the one who sat in the NICU 13 years ago and listened to a grim-faced pediatric neurologist say that her boy might never walk, it is a spectacular and unique milestone. ("Child will learn to tap dance" said no baby book ever.)

And to this mom, the one who's realized that kids with special needs often face more closed doors than open ones when it comes to mainstream activities and programs, it's heartening that the dance school owner was open-minded about lessons from the first email I sent.

Maybe this doesn't see like such a big deal because we did a private lesson. But trust me when I say that a lot of schools and teachers wouldn't have been receptive.

Kaela talked to Max, not down to him. She let him wear the tap shoes she's had since she was 12. He had an entire studio, with a wall-to-wall mirror, to himself. And that's all I know about how things went, because Max informed me that I was not allowed to watch. We agreed, however, that I could come in at the end.

So I sat in the lounge. Well, for a few minutes. Dave stopped by, and together we peeked in except Max spotted us, grinned and shook has head. Busted.

At the end of the lesson, as promised, Max came and got me to show what he'd learned. Kaela had chosen one of his favorite songs, Happy. And I watched this boy dance. And he was so happy and proud of himself. And I was so happy and proud of him.


Then Max asked about coming back next week, which he will be. I bought him tap shoes. If he wants to practice a lot, I'll be sending him to your homes, k?

When I gave the school, the owner and Kaela a shout out on our local Facebook page, I noted that often people think it takes a lot of doing to accommodate kids with special needs, but the truth is it mostly takes an open mindset. I said that it's wonderful to see your child enjoying himself, but it's just as wonderful to see others welcoming your child with special needs.

Before we left, Max asked about being in the show at the end of the year, which is what started this. When he saw Sabrina's performance, he decided he had to try tap—and he had to be in the show next year.

Usually, they don't have private-lesson kids performing in the show. But Kaela? She said, "Maybe we can do something together. We'll see."

Friday, July 8, 2016

The Special Needs Blogger Weekend Link-up: Share a post or two


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: Do you, they say—but is that always 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. 

Thursday, July 7, 2016

Highs and whoas of a trip to the Central Park Zoo


• As we waited on a train platform yesterday morning, amidst commuters headed to work, Max ended up standing super-close to some guy (personal space: still in progress). "Hey, Max, want to make new friends?" I asked. "No thank you!" said he.


• As we settled into our seats on the train, Max exclaimed "Thank you, Mommy, for taking me to New York!" How did I get such a polite child?!

• I did the smart thing: I purchased zoo tickets online ahead of time, on the train. Too bad we needed to print them out. (Hello, environment?) We stopped by the Wyndham New Yorker hotel to see if we could print them there. One staffer said no. The next staffer I asked said yes. (Moral of the story: Don't have a third child because then you won't have time to purchase tickets online at home.)

• As we walked through a gigantic crosswalk, Max fell down. (He sometimes trips over his feet.) After a guy helped him up, he pointed at me and said "YOU PUSHED ME!" So much for my polite child.

• Max loved the zoo's movie Ice Age: No Time for Nuts. A mere nine minutes long, it's a 4D experience complete with snow, a couple sprinklings of water, whirls of cool wind, movement and lights.


• I had to sit through it again, mainly because Max liked the snow.

• Then Max queried the ushers on exactly where the water and snow came from in the theater. Smart boy.

• Max decided that the bronze animals (a bear, hippo, goat, elephant, kangaroo and penguin) that rotate on the stroke of every hour and half hour at the zoo's Delacorte Clock were just like the ones in the movie Madagascar. I explained that they were old, but he wasn't having it.


• Got to the sea lion feeding early enough to get a seat! But then, one minute before the show started, Max spied a girl eating ice-cream and wanted to leave to get some. He wouldn't listen to reason, so in desperation, I told him I had to look up where to get ice-cream, and proceeded to stare intently at my phone until the show started.

• Max was mesmerized, especially when the sea lions danced.

• He laughed when I said the sea lions were eating sushi. Or maybe he was just humoring me, I can't be sure.

• At the penguin exhibit (my fave), Max informed me that the Central Park Zoo had gotten the idea of frolicking penguins from the movie Madagascar. As proof, he insisted that we find clips from the movie and watch them.

• For the record, the penguin exhibit smells better than some New York City streets during the summer.

• As we observed puffins, I told Max that years ago Dave and I had gone on a trip to Alaska and saw an island full of puffins, and that I used to call Dave a puffin. He could have cared less.


• A lot of the animals in outdoor exhibits were nowhere to be seen, either because of the heat or because they'd finally gotten tickets to see Hamilton. Meanwhile, Fireman Max was utterly enchanted by another sighting at the zoo: Five firefighters (species: FDNY) sitting on a bench. They were there to inspect something, and taking a break. "What's with the shirt?" one of them asked. "He wants to be a fireman when he grows up," I explained, dutifully. (One of these years, I'm going to demand payment for being Max's spokesperson.) High-fives were exchanged all around.

• Five minutes into our stay at the Children's Zoo, where you can feed the animals, Max decided that he needed to be fed. Once he discovered the café had no mac 'n cheese, he was done with the zoo.

• Mac 'n cheese for him, ahi tuna tacos for me at Todd English in the fancy food court beneath The Plaza Hotel.

• Max wanted to ride a NYC bus. It's been a while since I've been on one and I'd forgotten: You can't use money, only a MetroCard that needs to be purchased at a train station or rare street vending machine. The bus driver let us stay on anyway.

• Said driver cursed at traffic and pedestrians continuously for the entire 20-block ride.

• En route hom, Max treated fellow passengers to a narrated train ride: "It's dark! We're outside! He wants our tickets! We're going fast! We're going really fast! Can we go back to New York City tomorrow?"

• As we got off the train, Max said, "Best day!" And it was.

Wednesday, July 6, 2016

Do you, they say—but is that always OK?


Max has long been fond of anything on wheels—cars, trucks, trains. Also: This stroller he's had since he was three. It's an adaptive Maclaren one given to us by a former physical therapist. When Max was younger, it came in handy for wheeling him around. These days, Max occasionally sits in it if he and Dave have walked far and he gets tired, but it mostly comes in handy for entertaining him.

Max loves to wheel that thing around—up and down the block and sometimes, through our neighborhood. Which is exactly what he was doing yesterday afternoon as Ben cruised along in his stroller, beside him. While he does like to wheel Ben, he also likes wheeling his empty stroller around.

I have no issues with this, and Max could also care less what anyone thinks. It's harmless fun for him. That said, it's not really doing much for his image.

Max isn't good friends with any of the kids in our neighborhood. They're friendly towards him, and that's as far is it goes. The other week, some boys were kicking around a soccer ball and they welcomed Max, which was utterly amazing. As in, it really shouldn't be a big deal to do that but given that this doesn't typically happen, it was a big deal.

And so, the stroller. That he likes to wheel. Empty. I wonder if it is further widening the chasm that exists between him and other kids. The red Fireman Max hat sure hasn't helped, but he no longer wears that day in and day out, just on special occasions (at camp last week, he wore it constantly).

OF COURSE I want kids—and everyone—to accept Max for who he is, quirks and all. I wish they could see all that Max is, not just his disability. The stroller makes it that much harder.

I could suggest that Max quit wheeling it around or, at the very least, limit its usage. Maybe I could come up with an alternative for him to push around. He does like shopping carts. But that wouldn't do much for his image, either.

And this is where I get stuck. He's older and you have to help him not seem too childish, says one part of me. The other: Why mess with an activity he enjoys?

Tuesday, July 5, 2016

Savoring the babyhood I missed the first time around


I am in awe of Ben every day. Not just because, at nearly nine months old, he's particularly chubalicious and sweet. Not just because some days, I still can't believe we were lucky enough to have another kid. It's also because I am amazed by all the baby things he is doing that Max didn't at his age. No movements came easy to Max, other than smiling; the cerebral palsy made his muscles stiff and uncoordinated. 

I don't recall being this wowed by Sabrina's development. Perhaps time has faded those memories. I'm definitely around Ben more, as I'm not working full-time right now. And maybe I'm extra-attentive to everything because I know Ben is our last child. Heck, maybe I'm no longer distracted by the volcanic spit-up, which has pretty much stopped. Whatever it is, I am regularly thankful for Ben's accomplishments.  

He can sit up unassisted, without a physical therapist holding his torso upright and doing exercises with him to strengthen his core. 


He can open both hands, all the way; they are not tight and fisted.

He can grasp a spoon, blocks, board books and toys, without an occupational therapist folding his fingers around them and showing him how.

He can hold objects with two hands at once, and move them from hand to hand.

He can use his pointer finger to touch things.  


He can prop himself up on his hands.

He can rock back and forth on his hands and knees, with no therapist crouched over and positioning him into place. I can still vividly recall Max's Early Intervention therapist, Mindy, doing that.

He can say "Da da da!" and b's and m's and other sounds that speech therapists tried so hard to coax out of Max.

He can babble. When I'm with him in the car and hear him in the back seat, I think of the silent drives with Max and how I hoped so badly to hear him babbling. 


He can nibble on toys, one of the ways babies explore the world, unless yours has sensory issues.

He can raise his arms up when he wants me to hold him, which makes me swoon every time.

Max eventually did a lot of these things. He was progressing on his own timeline, and nobody else's. Still, the desperation, anxiety and loss that consumed me during his first year is not something my mind or heart have forgotten.

I feel guilty at times for relishing Ben's progress; it doesn't seem fair to the baby Max was. It's no reflection on Max, I realize when I think it through, but rather the residual of my mourning during that time in his life. It's hard not to feel that you were denied the parenthood you expected when your first baby had major developmental delays, just as it's impossible not to marvel at the movements, gestures and sounds that come so easily to your other child.

I have lots of awe for Max, too. I take nothing that he does for granted. The progress may be more spaced out these days, yet here are plenty of random moments when I consider how far he's come and feel grateful. Yesterday, when the two of us got home from a supermarket run, I scooted into the house ahead of Max to put down the heavy packages. I turned around to go back out and get him only I didn't need to. Through the glass in the door, I watched Max carefully walk up our front stairs. And I felt lucky. So very lucky.



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