Friday, December 29, 2017

The Disability Blogger Weekend Link-up: New Year's edition


What to do if you're new here

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

Like this: Hey, Eminem, rap this: It's by the mom of someone you dissed

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, December 27, 2017

The Love That Max 2017 Year in Review


It's time, once again, to look back on the year's highlights, whoas, uh-ohs, milestones, inchstones and everything in between.


In January, Max helped his little brother learn to walk and planned (and planned and planned) a trip to Disney World, and I struggled with a painful part of a camp form.


In February, Max wanted to discuss his differences, went to a prom and participated in a program that showed that it isn't that hard to include people with disabilities.


In March, Max ice-skated in a very unique way and did supermarket therapy with his speech therapist; a mom shared an amazing story about what happened when her son found the r-word spelled out at Target; and I wrote a letter to parents whose children have been diagnosed with cerebral palsy and poked fun at the weird habits of special needs moms. (Guilty!)


In April, Max reminded us all to focus on what you can do, not what you can't and Jimmy Kimmel brought me back to that time after Max was born.


In May, Max declared that he does not have special needs, and I shared the lessons I learned from finding a new school for Max and made peace with the lack of togetherness on family vacation.


In June, Max walked a fashion runway and read a food label, and I pondered what it's like to compare your child with disabilities to his peer with disabilities and rounded up some great cups and water bottles for kids and teens with disabilities.


In July, Max climbed into a car on his own for the first time and took a short walk by himself that was a giant leap for Maxkind, and parents shared 35 good ways to treat children and teens with disabilities.


In August, I spoke out against people who think that children with special needs shouldn't attend baseball games, Sabrina volunteered for Max's program (and continues to!) and Max rocked as a big brother.


Max started high school in September, proved that he knows his strengths and—during a trip to a zoo—reminded us that you're never too old to do basically anything. I had mixed feelings about people giving Max free mac 'n cheese but gladly ate a plastic hot dog for dinner that Max "grilled" for me. Also, I scored an interview with the stars of Born This Way.


In October, Max achieved his fantasy of riding a fire truck in a parade, I didn't help Max this one time (and it was a good thing) plus I tried to see his future and failed. A show with an actor who has cerebral palsy made me realize that it's good to talk about our children's differences.


In November, I fretted about what kind of job Max would someday have, accepted that I had to keep an open mind about it, felt glad to know about the big blue swing in the park and explained why raising Max makes me celebrate Thanksgiving 365 days a year.


In December, Max wrote about his trip to Las Vegas. I acknowledged that sometimes what holds back our children is us, shared the things you don't know when you become a special needs mom, composed a rap song to Eminem and explained why we wouldn't change our children for the world.

Amen. Hoping you and your family have the happiest of new years!

xo

Tuesday, December 26, 2017

5 key pieces of advice for parents of autistic children


This guest post is by Jane Kim, an immigration attorney, writer and mom of a five-year-old with autism. She lives in the Philadelphia suburbs and, she says, "I can often be seen chasing after my son, who enjoys anything on wheels."

A few months ago, during a particularly dark time, I was tidying up around the house and came across my baby shower scrapbook. I sat down and flipped through it tearfully, taking in the smiling faces of family and friends, tables piled high with brightly wrapped presents and three-tiered diaper cake. But there was also something invisible in the scrapbook that this mom of a child with autism had lost: hope. 

Then I found the notecard. My sister had asked guests to provide advice to me, a first-time mom. Afterward, everyone voted on the card that had the best advice; this was it. Reading it was a reminder of the unexpected journey my life has taken since my son was diagnosed a few years ago. Life is so different than what I expected at that baby shower. But as I pondered the advice, I realized it was also a reminder of just how far I’ve come.

This is for all parents out there who have been told their child will be different and who, like me, have struggled. This is a reminder for all the parents who tirelessly advocate for their child, meet with therapists, incorporate their suggestions, attend numerous doctor visits and complete the never-ending piles of paperwork that you are doing the best you can.


“Smile a lot,” the card said.

There will be times you won’t feel like smiling. I didn’t when my son was really young. There was too much worry, uncertainty and new therapies for me to digest. What helped me regain my happiness was time, seeing a therapist, a tremendous support system and most importantly, a stronger understanding of what makes my son tick. I also learned to appreciate my son’s funny, quirky personality. I smile when when he asks to read a book or listen to a song “two times,” never just once.

Your children’s accomplishments, big and small, will also bring smiles to your face. Recently, I smiled (and cried!) when my son looked up from eating his breakfast and said, “Mommy, thank you for making all of my meals.”

“Don’t sweat the small stuff”

When my son was just a year old, his developmental pediatrician—the person we hoped would be a trusted advisor and guide for the years ahead—told us to lower our expectations for his future. That was the worst day of my life: I grieved for my son and the bright future our family had envisioned. Although we suspected he was on the spectrum, I was unprepared and unwilling to accept a future of limited possibilities at such a young age. I swiftly changed pediatricians, but the damage had already been done.  

From that day forward, I worried about everything: Why won’t he drink from a straw? Why didn’t he like meat or ice-cream? Why wasn’t he interested in coloring? There was so much to worry about that I started to lose sight of the big picture. I tried to rein in the worrying, but it had become bigger than me. Although I have a caring family and friends, there was only so much they could do. Ultimately, talking through the worry with my therapist helped me decipher which concerns were legitimate, which ones weren’t and how to best move forward. 

Today, I’m grateful I recognized the importance of seeking outside help to gain perspective. I’ve also learned to appreciate the little gains: the first time my bson watched an entire movie, his first joke (involving poop, of course!), when he told me he wanted to sleepover at his cousins’ house again. I never thoughts these things would bring me such joy, but they are gains to be celebrated.

“Don’t worry about what other parents are doing”   

Plenty of parents deal with this, whether or not they have a child with disabilities. But next time you catch yourself comparing yourself to another parent, consider how it makes you feel. I know it makes me feel small and insecure, and when I make myself aware of that, it forces me to stop thinking about, say, how another parent has more patience, time and grace than I do. The truth is, every child’s needs are different and every parent has their own approach, and the more you recognize that, the less you’ll beat yourself up. Speaking of which…      

“Forget about feeling guilty”

This is the piece of advice I struggle with the most. My son heads to kindergarten next year and I’m doubting whether we’ve done enough to prepare him—particularly socially—as kindergarteners these days are sophisticated creatures! Should I have enrolled him in in that evening social skills class? Should I have gotten more involved in school volunteer activities and connected with other parents? Maybe then my son would be invited on more playdates and would better be able to form friendships and navigate social situations. The guilt abounds.  

Once again, recognizing that I'm careening toward Guiltland has helped me re-examine things with a clearer mindset (i.e., he didn’t enroll in social skills class because it was during dinnertime and I think it’s important for our family to eat together.)  

Aside from questioning my choices as a Mom, I also used to often feel guilty when I took time for myself to do something, like have dinner with a friend. I had brainwashed myself to believe that if I wasn’t doing something directly for my son, I wasn’t helping him. Today, I realize that I am a better person, daughter, sister, friend, colleague and Mom when not all the focus is on my son—and he is a better kid as a result of it. 

By not over-focusing on him, my son is better able to showcase his abilities and increased independence. Like the time when my sister took him to the park and he was pumping his legs on the swing when I came to pick him up, something I'd never seen before. Or the time I got stuck on a lengthy conference call, and he was quietly flipping through the pages of a book when I came downstairs.

“Don’t forget about who you were before you became a parent.”

I am a proud Mom—but that is only part of who I am. I am also a fiercely loyal friend, the “cool aunt,” a writer and a tennis player with a pretty sweet serve. I’ve been told I make some of the best arancini balls on the planet. 

Before my son was born, I had plans and dreams of what life would be like at age 40, 45, 55 and so on. After my son was born and our suspicions of his disability were confirmed, I stopped planning. Life stood still. Autism was all-consuming: it zapped my desire to travel and to celebrate milestones like birthdays and promotions. And to some extent, it impacted friendships as I turned down invitations to social gatherings out of fear that people wouldn’t understand, or even worse, judge my son.   

These days, things are different. I miss that person I used to be, but the truth is, I am a work in progress. Love and support from family and friends buoy me and milestones are celebrated, as is daily life. As my son has shown me, you can live with autism and still have a great life.


Jane Kim is coauthor of Top of the Class: How Asian Parents Raise High Achievers—And How You Can Too. She'd love to hear from you—feel free to share your advice on her post or email her at janeykim1976@gmail.com.   

Friday, December 22, 2017

The Disability Blogger Weekend Link-up: Ho ho ho


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: We would not change our children for the world: THIS.

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, December 21, 2017

I'm annoying him. Squee! I think?


"Two times!" Max said, shooting me a look. We were standing in the kitchen after he got home from school and I'd again reminded him to give the holiday present to his occupational therapist when she arrived. He was letting me know that I'd already told him once and he didn't need to hear it twice.

I have been dealing with tween 'tude for years now, courtesy of Sabrina. It's been kicking in with Max, so now I have tween and teen 'tude to contend with. Toddler 'tude, too.

I can't say I'm thrilled. Except, it is pretty cool to see Max coming into his own. He may not be 15 years old in some ways, but his attitude and the fact that I annoy him is totally age-appropriate. The one thing Max hasn't mastered yet is the eye roll, and I'm sure not getting him therapy for that.

Like many teens, Max thinks he knows everything. I could tell him anything—"You can't eat that, it has nuts!"/"The GOP tax plan passed and we're screwed!"/"I was a rock star in a former life!"—and he would respond, "I know!"

Like many teens, Max is also obsessed with earthly possessions, specifically anything tech-y. Last week, he saw a commercial for a Samsung Galaxy tablet and got it into his head that he needed to ditch his iPad mini, which has his TouchChat speech app.

Max was definitely in a contrarian mood that afternoon because after he glared at me, he grabbed his iPad from the charging station.

"It's old!" he announced. Then he handed it over to Ben, explaining that Ben could now use it to watch train videos, and showed him how to use it.


"Max, you need to keep using the iPad or your speech app," I pointed out.

"NO!" he said.

"Max, I don't think you can use TouchChat on the Galaxy, I'll have to check," I said.

[Glare.]

When the OT showed up later that afternoon, I told her that Max might be fixated on talking about the Galaxy tablet. Sure enough, when I stopped by his room to ask her something, I heard him informing her that she could use a Galaxy tablet during their sessions.

"Oh, don't rope me into that!" she said, laughing.

At least Max has now stopped talking about moving to Las Vegas.

It is with a mix of pleasure and terror that I say: Teens!!!

Wednesday, December 20, 2017

15 genius little ways to entertain children on a plane or road trip


As much as I'd like to take Ben's entire train set with us when we're traveling during the holidays (he's obsessed), it's obviously not happening. I was getting anxious about entertaining him, because I do not want him to spend hours stuck to a screen, but then I asked around and a bunch of moms shared their secret weapons er playthings for the best playthings for plane rides and road trips. (I've refrained from recommending knocking your tot out with Benadryl, one mom's reco, as tempting as it may be).

So, here you go, suggestions for kids of all ages and all abilities. Some parents like to wrap stuff up, enhancing the surprise. None of these will take up much room in your carry-on, but they're all worth their weight in gold. They're also inexpensive, although peace of mind when you're on a plane is priceless.

Painter's tape or washi tape
Tear off pieces and your child can stick them anywhere. Get a pack of ones like the above (Allydrew, $12.05) and you'll have 12 different playthings in fun colors and patterns.


One word: STICKERS
The more, the better—especially if they're reusable, like the ones in these Vehicles and Habitats pads are (Melissa & Doug, $8.99 for two pads). FYI, these are not totally small—they're 11 x14—but they're skinny and would fit in a tote or in a backup. Also available in 'Tis The Season, My Town, a set of Fairy, Dress-Up and Mermaid pads and Play House!



There's always Post-it notes
Seeing a theme here? That would be: sticky! Just bring a pad of Post-its, or try fun shapes like these people cut-outs (Lifetime Inc, $10)


Wait for it: Window gel clings!
Pick them up at the dollar store or online and your child can put them on and off the plane window seat or pull-down tray, like these Under the Sea Ocean ones (Incredible Clings, $9.95). Also check out the Farm Animal Gel ClingsWild Animal Gel Clings, Dinosaur Gel ClingsSolar System Gel Clings, Winter Gel Clings, Insects & Bugs Gel ClingsChristmas Gel Clings, Cars & Trucks Gel ClingsABC's and 123'S Gel Clings and First Words Gel Cling.





A Slinky
Particularly handy if you have a child who likes to stim. (Slinky, $6.31)


Stackable cups
I like this set of eight because they have large numbers embossed on the bottoms of the cups, to sneak in learning. (First Years, $3.99)


Rory's Story Cube
This one's great for older kids. Each one of the nine jumbo one-inch cubes has six images or icons. Roll them for a random grouping of images, then use them to create a story that starts with "Once upon a time...." Hopefully, they'll give your plane ride a happy ending. (Gamewright, $8.74)



Finger puppets
Ten opps to keep your child amused! These animal cuties are made of soft velvet. (Super Z. Outlet, $6.99)


Color Wonder Mess-Free Coloring Mini Stow & Go Pad
Super-portable. No-mess—the invisible marker only shows up on the special paper, not on hands. Fun. Win win win! (Crayola, $7.78). There's also the Disney Frozen pad, Paw Patrol pad, Sofia the 1st, Disney Planes and Despicable Me.


Water Wow! On The Go Water-Reveal Pads
More no-mess coloring: These involve filling a little wand with a bit of water. (Melissa & Doug, $4.99). There are a whole lot of kinds including Pet Mazes, Shapes, Numbers, ColorsVeggieTales, and even Bible Stories.


It's snacks! It's a rattle! It's both!
Stash mini pretzels, Cheerios, Goldfish or anything crunchy in a container. Says one mom, "It's a fun rattle until they get hangry, then it's a snack!" I like the ZoLi Sumo Snack Dispenser—three 8-ounce stackable countainers that are BPA and phtalate free. (ZoLi, $18)


Buckle toy 
It's already a go-to for us—our little guy will literally not leave home without it. (Buckle Toy, $20)


A koosh ball
This one's a larger four-inch size, so it's especially easy to grasp. (Basic Fun, $12.95)


Twisty thingies
Think pipe cleaners or Wikki Stix ($6.24 for a package).


A mini doodling/drawing board
Check out one that comes with a pen like this mini MagnaDoodle, the compact DoodlePro (Fisher-Price, $8.26) or portable Etch A Sketch.

Tuesday, December 19, 2017

We would not change our children for the world: This.


"I would not change you for the world, but I will change the world for you." Mom/entrepreneur Amy Wright said that onstage the other night as she accepted CNN's Hero of the Year Award, speaking to her two youngest children who were watching from TV at home. They have Down syndrome. Last year, Amy opened up Bitty & Beau's Coffee in Wilmington, NC, named after them.

I nearly stood up from the couch and cheered. YES, this, a million times.

Amy was driven to start the coffee shop by the fact that some 70 percent of people with disabilities are unemployed; she thought it would bring people together and help others see the ability in disability. She currently employs 40 people with disabilities.

It's so true: I would not change Max for the world. I know this would have been hard for me to understand before I had a child with cerebral palsy, and when I say it I wonder if parents who do not have children with disabilities think that I am not being totally truthful.

Ah, but I am. My child with disabilities is as perfect in my eyes as my other children and his peers. He is every bit as wanted, admired, adored and lovable. This is because I am his mother and he is my child. Parents love their children—it's what parents do, whatever variety of child you get. Contrary to what some might think, parents of children with disabilities do not parent out of pity. We are not modern-day saints. We parent out of l-o-v-e.

I love Max, too, for his unique self, which includes the cerebral palsy. I could not imagine him without it, same as I couldn't imagine auburn-haired Sabrina as a blonde or monkey-boy Ben as a tot who likes to sit quietly and flip through board books. These traits are an integral part of who they are. Max wouldn't be the same guy without his quirks and mannerisms, including the ones that come from the CP—his lumbering gait, the way he calls me "Ohmmmy," the cute way he waves at people, his hand jerkily moving up and down. Years ago, when I started dating Dave , we went out to a diner one night. I don't remember what we were talking about but Dave said "A little bit of this, a little bit of that" as he simultaneously wagged his pointer fingers left and right and I fell for him right then and there.

My son's disabilities don't make me ache for some "perfect" boy. You love someone for who they are, not what they aren't.

Max doesn't sit around wishing for some alternate version of himself, either. He goes about his business, doing his best at school, getting therapy afterward, enjoying weekend activities and programs, visiting fire stations and dreaming of becoming a firefighter, searching for his next great travel adventure, snookering us into buying him electronic goods and taking him out for sushi. See: He is who he is. Nobody in our family gives his cerebral palsy a second thought.

Yes, I have grieved, especially early on in Max's life—but that's been about me, not Max. Society does not set you up to embrace or even understand disability, and I had so much anxiety, doubt and fear. But these feelings have ebbed away as I've raised Max and gotten to know the disability community. Now the occasional pangs of sadness and frustration usually come from other people's perceptions of him—when people treat him like a tragedy or a second-class citizen, when he is excluded from a program, when people cannot see the ability. Oh, and when I deal with the insurance company, since that has sucked away approximately 1.5 years of my life; them, I most definitely would change.

Of course, at times I wish things were easier for him. I wish Max's muscles were a little more relaxed so they didn't stiffen up and wear him out. I hope his speech keeps getting clearer, as he would very much like to verbalize words. When Ben raises his arms to have Max pick him up and Max can't, I have wished that were possible. But then, at times I wish certain things came easier to my other children, too. As their mom, I want them to have a life with few restrictions.

I try to enable all my children as best I can, find work-arounds, push for the support and assets they need to succeed—and in Max's case, be included, period. With him, I have to overcome the obstacles of people's misconceptions, ignorance and closed-mindedness, whether it's persuading a camp director to let Max attend a session even though they usually do not host people with physical disabilities or speaking out against the use of the r-word—the "I will change the world for you" part of Amy Wright's sentiment. As she said toward the end of her speech, "My employees are not broken. Two hundred million people across the world living with an intellectual or developmental disability are not broken. What's broken is the lens through which we view people with disability."   

I do not love my child in spite of his disability, as that would mean a disability is unfortunate. I love him for all of who he is. I would not change him for the world....but I will change the world for him.

Monday, December 18, 2017

My trip to Las Vegas: a post by Max


This post is by Max, as dictated to me.  

I went to Las Vegas, Nevada on Thursday, December 7 for four days. I went with Daddy and Grandpa Michael.

We stayed at the New York-New York Hotel. It is a very big hotel. We were on floor 22. My room had two beds and I saw a roller coaster out the window. There are big buildings that look like New York City in the hotel. And a Starbucks. I had milk there. Daddy had coffee. A lot!

This is when we got to the hotel. 

I took a walk with Daddy by New York-New York. I was so excited. 

On Friday morning, we went to visit a fire station in Clark County. They were very nice. The fire trucks were yellow. I like red fire trucks. That was Mommy's fault. We went to a new station in downtown Las Vegas. They had red trucks. I was happy.


Daddy took me to lunch at In and Out Burger. Ewww. I had French fries and a cheeseburger. Daddy had a cheeseburger too. Ewww.

On Friday afternoon we went to Shark Reef Aquarium and Polar Journey at Mandalay Bay. I saw a lot of sharks. They were cool. I saw a lot of fish. I saw a movie about penguins. It was fun! I want to go back!

I walked here



Friday night we went to The Buffet at the Excalibur hotel. It was very so good. It was huge! I ate cheese ravioli, mashed potatoes, pizza and sushi. Daddy and Grandpa ate everything. I ate pumpkin pie, ice-cream with hot fudge and flan. Daddy bought me a piƱa colada. Daddy said my belly was big.

I think people should eat here. It looks new. The food is amazing. 

Saturday morning we went to see animals and dolphins at Siegfried and Roy's Secret Garden and Dolphin Habitat at the Mirage Hotel. There were white tigers. I heard the lion roar. The lion was white too. It was so cool. I really like dolphins. The dolphin said hi to me with his fin. It was so funny!



In the afternoon we went to Adventuredome at Circus Circus hotel. It is very big and there are a lot of rides. I went on bumper cars by myself two times. I bumped into other cars. I'm a good driver! I went on the Road Runner ride with Daddy. It was very fast. It went backwards. Rudolph the Red-Nosed Reindeer movie there in 4-D. Water splashed my face!


I went on a ferris wheel ride

Saturday night was my birthday party at Benihana Westgate. My cousins came, they live in Las Vegas, they are so lucky. I had sushi and fried rice with vegetables. Everyone sang Happy Birthday to me and I had ice-cream with a candle.


Sunday we went home. I cried because I was sad. I'm going back next year to Las Vegas.

We had the best time!


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