Friday, October 30, 2015

The Special Needs Blogger Weekend Link-up: Give it up right here


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: A whole new level of love in our family

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, October 29, 2015

How to dress up like the parent of a newborn for Halloween


If you usually wear contact lenses, remove them and put on your glasses. Ideally, the lenses should be slightly dirty, as if you have not had a chance to wash them or basically do anything for yourself for the last few weeks except occasionally eat and drink and take bathroom breaks.

• The night before, do not sleep so you have that glassy-eyed, delirious appearance.

• Do not shower or apply moisturizer or perfume. No skin lotion, either, if you want to do this right (new moms can't spare the time).

• Do not put on any makeup except for approximately nine to ten pounds of undereye concealer.

• Do not do your hair; you're going for that haven't-washed-it-in-a-week look.

• Put on a nursing bra and stuff it till it looks like you are a 60G, followed by your granniest granny panties, your most shapeless top and your most shapeless sweats, yoga or maternity pants.

You will look extra authentic if you create spit-up stains on the top and/or wet spots by your boobs.

• Place a burp cloth over one shoulder.

• Dab a bit of spit-up behind each ear so you have that Eau de Spit Up scent.

• Stick out your stomach and/or pad it so it looks bulgy and lumpy.

• Fill your trick-or-treat bucket with samples of nipple cream and Soothies Gel Pads.

• Borrow a baby. If you can't get your hands on one, no worries: People will immediately know what you are. Especially if you have wet spots.

• As you stuff your face with Peanut Butter Cups, make a show of Googling whether it is OK to eat peanuts while nursing.

• If anyone asks you about something as you make the rounds, be it politics or a recent episode of The Walking Dead, respond with some disoriented remark about breastfeeding, poop or sleep.

Wednesday, October 28, 2015

The thrill of one finger stroking a baby's head


We put Ben on Max's lap the other day. Max gently stroked the baby's head with his pointer finger when he started to cry, and I felt a rush of gratitude. Not just because Max was comforting him, but because of that finger. When Max was little, we weren't sure he'd be able to use it.

As Max has gotten older, I've come to take some of his physical and cognitive achievements for granted, including the biggies (like walking and reading) and the not-so-seemingly-big-but-still-biggies (like holding a spoon and picking up toys). Max's speech is probably the one thing I regularly appreciate, perhaps because both his progress and challenges are apparent every time he talks. Every so often, though, Max does something and the struggles we went through in his early years come back to me.

Typically-developing tots between 9 and 12 months old usually start doing a basic pincer grasp, learning to hold onto small objects like Cheerios with their thumbs and pointer fingers. Max's fine-motor skills were pretty impaired because of the stroke; at times, just getting him to open his fisted hands was a challenge. Until he was seven, he tended to grasp objects—and hold onto them for dear life—using whatever fingers he could maneuver.

When a forward-thinking speech therapist at Max's school had him try the Proloquo2Go speech app five years ago, it seriously encouraged him to isolate his pointer finger and start using it more. Max still doesn't have the most stellar pincer grasp, but 1) He continues to make due and 2) Nobody ever lists "Amazing pincer grasp!" on their web dating profile.

Then I saw Max stroking Ben's head with his finger and I was wowed. And when Ben was falling asleep one evening while I was nursing him and Max tickled Ben's foot with a finger to try to wake him, oh, how amazing it seemed. It's also still a really cute finger.

Maybe I'm noticing Max's use of his index finger because his relationship with Ben is new, and I'm taking it all in. Or maybe it's because unlike with Sabrina's birth, when Max was two and had a long way to go developmentally, this time it's so very clear just how far Max has come.

Tuesday, October 27, 2015

When my son communicates, will he share our secrets?


This guest post is by Jesse Torrey, mom to Anna, 15, and Jack, 17, who has a rare disease that's caused speech loss and other challenges. Jesse blogs at Smiles and Duct Tape, and recently finished a book by the same name. This summer, she read a post at a Listen to Your Mother performance. As she notes, Jack's condition "has managed to take a lot from our family, but Jack never has lost his sense of humor or his beautiful smile. That's the 'smile' in my blog title. The duct tape is all the other stuff we need to hold our family together—family, friends, doctors, teachers, community, adventures, wine, etc."

For years, I’ve dreamed of hearing my son, Jack, speak. I’ve pictured it clearly enough that I’ve felt the words as they hit my ears. I imagined him struggling at first, but quickly remembering how to maneuver his lips to make sounds that turn quickly into “love” and “Mommy”.

Eight years ago, it never occurred to me that Jack would find his words using something as silent as a whiteboard. He lost his ability to speak when a rare disease, adrenoleukodystrophy (ALD), created chaos in his nine-year-old brain. (ALD is the disease depicted in the movie Lorenzo's Oil). Since then, he’s been a silent witness, sitting on the sidelines, watching everyone around him and listening. He understands most everything that people say.

Lately, he’s started responding to questions by circling answers when provided with a few choices on the white shiny plastic. These “conversations” feel more like a game of 20 Questions than true communication, but we’re thrilled. It’s finally proven that he is able to read and capable of controlling a marker enough to make a simple circle around an appropriate answer—this is HUGE progress for our boy.

Of course, we’re all hoping this is the beginning of significant headway in the language department. That it might lead to writing on a whiteboard or finally using his iPad with some consistency. Or, maybe (fingers and toes crossed) something might trigger in that brain of his and he could start speaking. No one is happier than his mama. But, as we creep closer to language, I’m starting to worry. What on earth is Jack going to say?

Jack knows secrets about almost everyone who has stepped foot in our center-hall colonial. He’s been in the middle of parties full of his sister’s rowdy friends, and sat quietly in his back seat car throne, while his father and I sit in the front seat discussing private matters as we drive down the highway. And, on many occasions, Jack’s perched on his kitchen stool, surrounded by middle-aged women drinking coffee or Sauvignon Blanc, while loudly discussing their husbands, their children, their friends, their hair cuts and other tedious details of the lives of suburban housewives.

I’m not sure why we all feel so free to talk in front of our handsome teenage boy. Perhaps it’s not just his silence, but his ability to disappear into the landscape. He’ll sit with his eyes glued on the television with only a brief giggle indicating he’s heard an inappropriate phrase come out of an unsuspecting mouth. For eight years, he has been silently collecting an arsenal of stories.

What if our dream of words comes true and stories start pouring from his lips? Will he feel the need to share all of our secrets or can we trust him? I wonder how much I’d need to pay him to keep his beautiful mouth closed?

This morning, as we sat on the front steps waiting for his school bus, I asked him, “JackO, will you ever share my secrets?”

I used our black marker to write YES, NO and MAYBE. He looked down at the words and then up at me. Then, he giggled as he circled all three.

Monday, October 26, 2015

A whole new level of love


I can still recall the exact look on Dave's face when he held Max in his arms after my C-section, a mix of love and awe. I fell in love with him a little more then, just like I've done in recent days as he's held Ben.


I can still vividly recall Max being awed by Sabrina when she came home from the hospital. He was sweet with her from right from the start, and it made me melt. (To this day, he only gets upset with her when she teases him.)


Now I'm blissing out over the love the kids are lavishing on Ben. They want to be around him and hold him as much as they can. Sabrina coos at him all the time. Max regularly informs him, "I'm your big brother, Ben."



This little guy is making me giddy happy. Slow-dance-with-him-cheek-to-cheek happy. Sing-songs-to-him-about-his-cuteness happy. Cuddle-him-nonstop-can't-believe-he's-mine happy. But seeing the kids adore their new baby brother is love upon love upon love.

Friday, October 23, 2015

The Special Needs Blogger Weekend Link-up: Go for it!


What to do if you're new here

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

Like this: Enter to win an iPad Mini 4 from Love That Max

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, October 22, 2015

Not sure what to say to kids with disabilities? Here you go


If you have a kid with special needs, you likely know the scenario: You see someone, adult or child, at the park, playground, birthday party or elsewhere looking at your  kid in a curious way. You can tell they would like to say something, but they're just not sure what. So maybe they just say "Hi" to you, and hope that you'll lead the way. Or maybe they never approach you at all.

I have been that mom more times than I can count, and Max has been that kid. And it's both frustrating and sad. I have learned to be the one to reach out first. As Max has gotten older, at times he also says "Hi!" for himself. But still: I ache for people to see past the disability and treat Max like any other kid.

The key word: "Hi." That's all it may take to bridge an awkward gap, as I've said in "What I'd like you to say to my child with special needs." You know, just like a parent or child would greet a kid without disabilities at the park, playground, birthday party or elsewhere. Now, a new campaign from the Cerebral Palsy Foundation (CPF) called "Just Say Hi" aims to diffuse the discomfort people sometimes have about conversing with people with disabilities; it features videos recorded by celebs and personalities.

Here's one from Jim True-Frost (of "The Wire" fame) and his son, Leo, who has cerebral palsy:


And here's one of my favorite actors, William H. Macy, on the topic:


The CEO of the CPF is the dynamic Richard Ellenson; he's dad to Thomas, 17, who has CP. The non-profit's mission is to transform the lives of people with cerebral palsy, social challenges included. As Ellenson says, "While 'just saying hi' only scratches the surface of all we can do, it's a simple and impactful first step."

I can't speak for adults with disabilities, but as the mom of a boy with CP who's very outgoing and social, I know he'd love to connect with other kids. I suppose "Wassup!" or "Sup!" or "Yo!" would also work. The point is, reach out. Don't be afraid. It doesn't have to be awkward.

If your child doesn't have special needs, think of how he or she would feel if people were reluctant to be friendly. Encourage your kid to say hello and chat, and please, do the same. Both of you have nothing to lose, and a whole lot to gain.  

Wednesday, October 21, 2015

Heard at our house this week


"Honey, I think he's hungry."—Dave

"Why does he have a Ralph Lauren onesie and I don't have anything Ralph Lauren?"—Sabrina

"I uh oooh, a-ee en!"["I love you, Baby Ben!"]—Max

"I think it's too soon to take him outside, he's so little."—Dave

"Dave, would you please remember to close the wipes case or they'll dry out?"—Me

"When I told him that Mommy was coming to get him, he got quiet!"—Sabrina

"Honey, I think he's hungry."—Dave

"He's the best little baby ever, exactly the way I pictured him!"—Sabrina

"En ayes ih oooh-ies!" ["Ben makes big doodies!"]—Max

"Your belly looks smaller but it's mushy."—Sabrina

"Honey, I think he's hungry."—Dave

"Why can't I stand up and hold him? Don't you TRUST me?!"—Sabrina

"Guys! I am operating on four hours of sleep! Can't you at least put the dishes in the dishwasher?!"—Me

"Should Ben be listening to HGTV? I don't think it's good for him, and I know."—Sabrina

"I'm ur eh uh-er, a-ee en!" ["I'm your big brother, Baby Ben!"]—Max

"Is the light in his room too bright? Do you think it's hurting his eyes?"—Dave

"But he just ate, like, an hour ago! And if you start eating too much, then you never want to stop!"—Sabrina

"I don't like those onesies you have to pull over the baby's head, I think they're dangerous. His head is so fragile!"—Dave

"Are you going to have another baby?"—Sabrina

"Wait, did you hear him burp or did I just imagine that?!"—Me

"I aye ih ooh-ies?" ["Did I make big doodies when I was a baby?"]—Max

"When I put him down in the crib, his head fell back a little before his body was on the mattress, do you think that's OK?"—Dave

"When can he eat chocolate?"—Sabrina

Neighbor: "How much did he weigh when he was born?" Mush-brained me: "Six foot three!"

"The baby book says.... [INSERT 2,500 FACTS FROM THE BABY BOOK.]"—Dave

"Ha ha ha! You just changed his diaper and he squirted! Ha ha ha ha ha!"—Sabrina

"Honey, I think he's hungry."—Dave

And don't miss...

Yet more Heard at Our House!

Heard at Our House: The saga continues!

Tuesday, October 20, 2015

My life with Down syndrome by Penny, age 9


October is Down Syndrome Awareness Month—or as the site A Day in the Life with Down Syndrome calls it, Down Syndrome Acceptance Month. Founded by the amazing Meriah Nichols, who continues to serve as project coordinator, the sites offers spaces for "my life" posts and videos written by kids or adults with Down syndrome and "allies" such as parents, like this post by Mariah and this one by a grandma.

The following piece from the site was written by Penny Becker (and when she got tired toward the end, dictated). Her mom is Amy Julia Becker, the noted Down syndrome advocate and author.

My name is Penny Becker. I like to wake up first thing in the morning. I like to get my flip­flops on because my flip­flops are more comfortable than my bare feet. I come downstairs first thing I see my mom, Amy Julia, and my dad, Peter, my little sister Marilee who is four and a half, and William who is only seven. I am nine and a half.


We get breakfast set up. I like to have bagel with cream cheese on top and on the side, with orange juice and strawberries.

At home I like to read after breakfast. Some of my favorite books are R amona Quimby Age 8 b y Beverly Cleary, Gooney Bird Greene, McKenna Ready to Fly, a nd Superfudge b y Judy Blume. I like these books because they all have in common girls and boys my age who do things I like to do­­ like gymnastics, reading in bed, going to school, and being an older sibling. McKenna has crutches because she broke her ankle.

I get my sneakers, socks, and braces on, get my backpack on, and leave for the bus stop with my mom or dad. I get on Bus 27 with my friends named Meredith, Heather, Yolanda, and Abigail, who are kind of silly. Some days I get to sit in the back.


At school I get off the bus and give a hug to Mikey because he is my friend. Some highlights of my day are unpacking my backpack, seeing my friends Toni and Sophia and Phoebe and Abbie and Katherine. My next highlight is putting my stuff at my desk and I put my water bottle beside my desk because of the Chromebook because you can’t get water on the Chromebook. (Mrs. Smith my computer teacher told us that we can not get food or water or juice on our Chromebooks.) I like math because I have my friends Toni and June and Mrs. Kaitani and Mrs. Reen and Mrs. Cohen. We have a mad minute which was adding today. Tomorrow will be subtraction. I like having a project on grasslands, which are tall grasses. School is fantastic!

My activities after school are read on the couch, change into dresses (which I love), ballet, acro, homework, and piano.


Every night we eat dinner but my favorite is a cheeseburger­­ medium, no pickles, no onions, with ketchup­­at a restaurant in town. Usually after the restaurant we get back late. But otherwise we go upstairs around 7:30, get in our pajamas, brush our teeth, and read. Some of our favorite books are T he Moffats, Anne of Green Gables (but I don’t like one part), and Matilda.

Some of my challenges are backbends, handstands, and I’m working on my cartwheels because I’m doing gymnastics with other friends.

I almost forgot to tell you about Down syndrome. My mom and dad thought it was going to be scary because they thought Down syndrome would hurt me and other people. But it actually was not scary and I did not get hurt. I have a great life.


You can follow Day in the Life with Down Syndrome on Instagram at #lifewithds and on Facebook; use the tag #lifewithDs on social media.

Shared with permission from A Day in the Life with Down Syndrome; photo of Amy Julia and children by Phil Dutton.

Monday, October 19, 2015

Not the son I never had


Today is Ben's bris, the ritual circumcision performed on the eighth day of a baby's life. It's happening at a local temple, where we'll be surrounded by family and friends. Ben will also formally be named (his full name is Benjamin). In case you're not familiar with a bris, the baby gets a little bit of sugary wine to keep him calm. It is not traditional for the mom to down a shot of Scotch to sedate herself, although the thought has crossed my mind.

While I can't say I'm exactly looking forward to it—brises that do not involve my own flesh and blood still make me cry—at the same time I appreciate that it's happening.

This is the bris we never had with Max.

Dave and I are experiencing a lot of never-hads with the arrival of Ben.

Last Monday was the birth we never had with Max. Tuesday was newborn day two we never had with Max. Newborn day three and day four and day five and day six and day seven were also days we never had with Max.

Friday, Dave and I had a first pediatrician visit with Ben that we never had with Max.

Last week, Dave hung an "It's a boy!" balloon in front of the house that we never did with Max, when we came home without him as he stayed in the NICU.

These early days with Ben are the early days we never got to enjoy with Max. My maternity leave with Max was filled with trips to specialists, anxiety and tears.

But then, Max. Although we could not have envisioned it when Max was a baby, we couldn't have gotten a better kid. This boy is amazingly good-natured, cheerful, sweet, empathetic, funny, curious, bright and so much more. He wakes me up in the morning with a kiss. He's always asking if I'm happy. He regularly leaned over to my belly throughout the pregnancy to tell the baby "I love you!" As we were eating dinner last week, Max looked at me, said "Thank you!" and pointed to Ben. MELT.

Max may have his challenges because of the stroke and cerebral palsy. Yet one thing is for sure: He is a great kid in his own right, just as I expect Ben to be—and not the son I never had.

Friday, October 16, 2015

The Special Needs Blogger Weekend Link-up: You thought I'd forget?


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: Enter to win an iPad Mini 4 from Love That Max

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, October 15, 2015

I just had to get past day two


So far, so good with Baby Ben. The C-section surgery went much smoother than the last time, when I felt so much pressure that I deliriously asked the doctor to stop (at which point he knocked me out). Recovery is slow; God bless pain meds.

The hardest part of having Ben was his second day of life. Because that's when Max's seizures started and our lives took a detour through hell. It's normal for babies to shudder and shake, but seeing Ben do so has been unnerving. I told the on-call pediatrician what happened to Max so she'd understand my concern about seizures, and asked her to do an extra-thorough check. I went through the same with Sabrina after she was born.

Ben is fine. Day two of his existence was spectacularly uneventful, other than the arrival of a big poop. (No worries, I won't be reporting on them regularly). Obviously, anything can happen any day...but newborn day two is a mental marker Dave and I needed to get past.

Dave had flashbacks too. At first he was scared to even hold Ben and when he finally picked him up he looked terrified. "I have that time with Max in my head," Dave said, looking sad for a moment. A friend who also has a child with special needs checked in, concerned whether Ben was OK. None of us take a baby's good health for granted.

Day three of Ben's life brought unmitigated bliss. My friend Wendy visited and we celebrated Ben and his cuteness. It felt wondrous to wheel him around the halls of the maternity ward, just like any mom of any newborn.

"Congratulations!" nurses and other parents said, and joy flooded through me...along with relief.

Wednesday, October 14, 2015

Blog blast from the past: Sometimes, we are THAT family

I'm sharing some blog classics for your reading pleasure, as I'm in the throes of new baby bliss/delirium. 


The scene: Sunday morning. We are en route to The Original Pancake House. We've tried to come here before, only the din has wigged Max out and we've had to give up and leave. But we are fools for pancakes, and so try again, we must.

I call the place. I tell them we have a kid with special needs, and ask if I can put our name on the waiting list now. "Sorry, no," the lady says, nicely. "We can't do that. But we can make sure you get seated really quickly once you're here." We decide to go for it.

As soon as we arrive, I jump out of the car and check in. There is a horde of pancake-hungry people waiting for tables. The hostess tells me she'll get us the next one that's free, and I say we'll wait in the car and could she call us when she's ready? She agrees.

"Oh, one more thing," I say. "He likes corner tables, if there is any way that is possible, that would be great!"

Never the shy type, I have become the world's pushiest person since having Max.

She says she'll try, without even a hint of WTF in her voice. It takes a lot of patience to be a parent of a kid with special needs, but I suspect it might take even more patience to be a hostess at a pancake place.

We hit the parking lot and entertain Max by finding Toyota Siennas (his favorite car) and letting him pat them. That's his thing: he runs around them and pats them down. Only this time, he sets off the alarm on one, and we grab the kids and slink away. Max has also turned me into an adult delinquent.

Five minutes later, we get the call from the hostess and walk in. Max wails. He screeches. The crowd gathered in the entryway stares. Literally, everyone stares. I pick him up and he flails his arms and legs, managing to whack me in the eye. I carry him to the lovely table in the lovely quiet corner. Sabrina sits down. Max makes a break for the door.

"I'll handle him, you order," Dave says, and he and Max head outside to feel up more Siennas, no doubt.

I order pancakes for the kids. "Can you please serve my son's in a skillet?" I ask. The waiter stares at me like I've just asked if they serve pancakes here. "My son likes to eat out of skillets at breakfast," I explain. It's true. If that's what it takes to get him to eat his eggs or oatmeal, we do it.

"I'll have to ask," the waiter says, and scurries off. The hostess who seated us returns, no doubt not surprised it is me again. "Sorry, the skillets are only for cooking food," she says. I realize that next time, I should BYO. I'm not sure a skillet will fit in my purse but when I get home I try and it does. So going forward, we will be THAT family who brings their own skillet to the restaurant.

Dave returns a few minutes later with a calm Max. "How did you do that?" I ask, once again amazed by Dave's ability to placate Max. "First we touched all the Siennas," Dave says. "Then I talked about his friend Caleb, and how much he loves him, just to get his mind off the restaurant." Smart man I married, eh?

And that was pretty much that. We had to keep asking the waiter repeatedly for napkins, since Max is a messy eater. Then Max needed his chocolate milk in a paper, not glass, cup. Then I needed a fresh cup of iced coffee because Sabrina decided to drop a crayon in there. But otherwise, we had ourselves a very pleasant pancake breakfast: Max, plain; Sabrina, chocolate chip; me, potato; Dave, wheat. And wow, were they good.

Have you ever been THAT family?!

Tuesday, October 13, 2015

Hi, baby!


Name: Ben Spencer (named after my dad, Robert—aka Bob—and Uncle Stanley)
Born: October 12, 2015 at 4:45 pm
Weight: 6.3 pounds
Height: 18.9 inches
Hair: Wowza
Enjoys: Crying, nursing, yawning, mewing and looking sweet
Dislikes: Being unswaddled
Favorite teams: Yankees, Jets
Smells like: Baby!
Looks like: ???
Parents and siblings: Deliriously happy

xo

Monday, October 12, 2015

Are you ever truly ready to have a baby?


Today is C-section day—please send good-delivery vibes my way.

People have been asking if I'm ready to have the baby. "Nope!" I answer, cheerfully. Because while on a practical level I am, I'm not totally there mentally or psychically.


Luckily, I've had a great pregnancy, indigestion, leg cramps and uncontrollable potato salad cravings aside. I finished up the nursery last week. Signed up for the newborn cord blood registry. Got the breast pump. Bought a bunch of baby clothes and gear, and lucked out with some nice hand-me-downs and gifts. Car seat is installed. Our kitchen reno is done, just in time. (I'll share about that after the baby arrives, as I'm still in recovery). Yet is anyone ever truly ready for any baby they have?

I remember, before Max was born, wondering how I would juggle my more-than-full-time job and a child. With Sabrina, I wondered how I would juggle two kids, including one with significant special needs. And now, I'm wondering how I'll be able to give Max and Sabrina the attention they each deserve and need.

A week ago, I took Max to visit a new speech therapist, because he is so intent on articulating words, the speech therapist at school is mostly focused on his speech app and otherwise he only gets one private session a week. I'll be committing to taking him weekly, and I'm not sure how that will go. As we walked from the car to the speech therapist's office, with me firmly gripping Max's elbow so he wouldn't trip over the uneven terrain, I pictured doing that as I carted a baby seat in the other hand and thought, How's that going to work?!

Thursday, I had to get on the phone with our insurance company for an appeal I made regarding their denial of speech sessions. I was grateful that it happened last week, before new-mom mush brain sets in. How am I going to keep on to of all the insurance claims for Max? Do the speech exercises? Help him and Sabrina with homework? Fill out all the forms for school and otherwise? Do activities with the kids, together and apart? And, come to think of it, how will I remember to water the plants and take care of the bazillion other to-dos in my life? How how how how how?

I've been giving myself pep talks. Somehow, I will somehow handle it, as I've handled everything that's come my way and as countless women before me have juggled three kids and more. And I also won't always be able handle it all, and life will go on.

I will likely be a lot more tired for the indefinite future. I may be more stressed. But there's one thing I'm counting on: When they hand me that little wrapped bundle in the delivery room, everything will be OK.


Friday, October 9, 2015

The Special Needs Blogger Weekend Link-up: You know what to do


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: Making a fire escape plan for kids 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. 

Thursday, October 8, 2015

Feel the music, and enter to win an iPad Mini 4


Music has been a game changer for Max—he learned to sing some words before he could speak them. It inspires him and makes him happy, just as it does for a whole lot of people. And now comes a new social project, Feel The Music, designed to expand musical access to the deaf and hard of hearing community, helping them celebrate, participate and share in their love of music.

The campaign is sponsored by AT&T, along with this post; they've partnered with D-PAN (Deaf Professional Arts Network) to create a contest. Award-winning film director Jules Dameron, who happens to be deaf, created an American Sign Language music video for the hit song Different Colors by the group Walk The Moon. The lyrics are so compelling; my favorite is this line, which speaks to this mom of a kid with special needs: "Different colors, we carry each other, we're just different colors."



The contest involves making a video with your own ASL interpretation of the song, up to six minutes long, and uploading it to the site. The grand prize: A trip for two to a Walk The Moon concert and VIP experience in December, exact dates and location to be announced. (Approximate retail value: $2560.) Each video can only have two people max, and participants must be at least 18 years of age (check out acceptable video formats and the official rules here). A committee will choose four finalists, then the public will vote on the winning video. The contest is open now through November 29, 2015 at 11:59 ET. Learn more about the campaign at this AT&T newsroom story or at Feel The Music.

ENTER TO WIN AN IPAD MINI 4!

AT&T knows just what a game-changer tech has been for individuals of all abilities; it's created accessible built-in features on their smartphones and tablets, including adjustable font and magnification and closed captioning on video playback. They also offer the Text Accessibility Plan for people with a speech disability and/or hearing loss (check out att.com/accessibility for more info).

AT&T is giving away one Apple iPad Mini 4 Wi-Fi 16GB in Space Gray, one Incipio Black Lexington Folio with retina display for an iPad mini, plus an AT&T t-shirt (value: $451.95).

To enter, leave a comment below about how you (and/or your child) might use an iPad mini; you must do this for entry. You'll also need to fill out your contact information privately on the Rafflecopter form. (Bonus entries are available, too!)

This giveaway is open from today through October 29, 2015, at 12:00 a.m. ET, to legal residents of the 50 states and the District of Columbia who are 18 years and older.

The winner will be announced here. See Rafflecopter "Terms and Conditions" for the full rules.

This post is sponsored by AT&T; we will be receiving an iPad mini, Incipio case and AT&T t-shirt. 

a Rafflecopter giveaway

Wednesday, October 7, 2015

World Cerebral Palsy Day 2015: Why I like to see people with CP


Over the weekend, Sabrina and I stopped by a local bookstore. The woman at the register looked to have cerebral palsy, and I was psyched to see her there—it's not so common to come upon people with CP or other disabilities at stores in our area, excluding a CVS.

Today is World Cerebral Palsy Day. When you have a kid with CP, you become very aware of other people who have it, who are in college and the work world, and who lead independent lives. They give me hope for Max's future. I think it's also very good for Max to see people like him. The rate of unemployment for people with disabilities is 12.5 percent, per the latest figures from the U.S. Bureau of Labor Statistics. Thats more than double the general rate of unemployment in the U.S., which is 5.1 percent.

There are an estimated 764,000 children and adults with cerebral palsy in America, per United Cerebral Palsy, and 17 million people with CP worldwide. Check out this video from the people behind World Cerebral Palsy Day 2015, along with words of wisdom from parents on what having a child with cerebral palsy has taught them.



Tuesday, October 6, 2015

Making a family fire escape plan for kids with special needs


Max knows some safety basics: to dial 911 in case of emergency, and to stop, drop and roll if his clothing is ever on fire. Still, we'd never put together a home fire escape plan for our family and it was time, especially since Max (make that Fireman Max, as he prefers to be called) and I are ambassadors for Kidde. This is Fire Prevention Week, established to commemorate the Great Chicago Fire of 1871, and the theme is Hear The Beep When You Sleep—as in, every bedroom needs a working smoke alarm.

When our local Fire Chief, Joe, and several firefighters came by to do a home fire safety inspection, we got guidance on a family fire escape plan.

Chief Joe was pleased to see our hallways are clutter-free, key for a quick escape in case of fire. He told us that he would place Max on a Special Alert list. Our fire department keeps a list of disabled and elderly people and where their bedrooms are located in the house; chances are your local fire station does, too, so it's worth the call.

The best thing to do if smoke alarms go off, Chief Joe said: Every one should yell, get out of the house and meet in a planned area—in our case, we decided, the neighbor's house next door. Max is getting pretty good at walking down the stairs on his own. If there was not much visible smoke and he was in his room, he would be able to get downstairs, although one of us would need to be around to unlock the front door for him.

The more dire scenario: If there is very thick smoke in a hallway, what Chief Joe called a "fire ceiling." A child sleeping with his bedroom door already closed (the safest way to sleep) could feel the doorway with the back of his hand to check for heat and know that if it's hot, to stay inside a bedroom. We've been repeatedly mentioning that to Max to help hammer it into him.

If a child has a door open, then he needs to close it (and ideally, open a window, although that's not a possibility for a kid with fine-motor impairment like Max). Chief Joe sat on Max's bed and explained to him that if there ever was a lot of smoke, he'd need to close the door. We asked Max to show us what he'd do, and he obligingly walked over to his door and shut it.

It was sobering to hear Chief Joe say that if Dave and I ever woke up to a very thick smoke situation, it would be best to call 911, go out a window onto the roof, yell and not try to retrieve either of the kids, as we could be overcome by smoke. The fire department immediately does a walk-around when they arrive, he explained, and we could then tell them about the kids. I had a couple of sleepless nights thinking about that scenario, but these are the tough things you need to discuss when you have kids, especially one with disabilities.

If you have a child in a wheelchair, it's ideal to designate one adult to be in charge of him or her. Safe Kids Worldwide, a partner of Kidde, has a really helpful video on this: Fire Safety For Families With Children Who Are Immobile.

Children with autism or cognitive impairment may benefit from a visual fire plan involving photos; see Fire Safety For Families With Children With Cognitive Impairments.

Got a child with a visual or hearing impairment? Here's an excellent video on a fire escape plan.

After the firefighters left, the kids and I walked through the house, noting all exits. I drew out a simplified map of our home on this Kidde graph, showing escape routes from each room to the outside. And at the recommendation of Chief Joe, we got two Kidde Escape Ladders, one for our second floor and one for our third.

The escape ladder we keep beneath our bed—my favorite new home accessory
Chief Joe told us how his dad used to make his family do practice runs on their escape ladder. I'm holding off until I'm no longer pregnant to practice, but already I have major peace of mind from having them—along with a solid fire escape plan.

More from the fire safety series from me and Fireman Max:

9 summer fire safety tips for outdoor fun

What we learned from our home fire safety inspection

Protecting your family from a home fire: 9 things you probably never knew

For more information, check out: 

Kidde on Facebook
@KiddeSafety on Twitter
@kiddefiresafety on Instagram

This post is one in a series sponsored by Kidde, for whom I am a compensated ambassador. 

Monday, October 5, 2015

Another theme park makes it harder for kids with disabilities


Yesterday my friend Peggy, mom to a boy with Down syndrome and autism, shared a flyer another mom had posted in an autism group she's part of. It's from Six Flags Great Adventure in New Jersey, whose disability policy will be changing as of November 7, 2015. (There's no mention of this so far on the national Six Flags Safety and Accessibility Guide).


Like many kids, Peggy's son loves going to theme parks. But in order to make the trip do-able for a kid with disabilities, special access to attractions is necessary. This is not about beating the system, as some people say—it's about equalizing the system. Many children with disabilities can't handle crowds, due to sensory issues, or long waits, due to fatigue issues. Some have issues with internal temperature control, which makes waiting on lines on a hot day a medical concern.

Great Adventure's system for people with disabilities, which started in 2007, is similar to the way Disney has operated. The park requires guests who have an Attraction Access Pass to get a reservation time at the attraction and then return. When we were at Disneyland in January 2014, you could get reservations at kiosks around the park—although when that didn't work out so well for Max, we were able to snag other quick-entry passes although I am not sure whether they are still being handed out.

Peggy was pretty disheartened. "As if parents of kids with disabilities don't have enough to prepare for when planning a park trip," she says of the new policy about a doctor's letter and ID. She also noted that parents might not know they need a photo ID or a letter when they get in their car to head to the amusement park, and that very few kids over 12 would even have a photo ID. She pointed out that a doctor may not be able to provide said letter as quickly as a parent needs it.

"Every park in their country has their own set of ever-evolving rules, and it's becoming a lot to remember," she says. (Her family frequently visits Disney World.)

Theme park crackdowns started in late 2013, after social researcher Wednesday Martin—while putting together her book Primates of Park Avenue—discovered that some wealthy families were hiring disabled individuals to gain special access to attractions. This put parks in a tight spot; they had to do something to contain individuals trying to milk the system. As Peggy says, "The positive side of the new Great Adventure policy, of course, is that it will help stop the people who are lying...."

Peggy continues, "I will get this taken care of." It's what we parents of kids with special needs do. But we sure wish it didn't have to be so hard, and getting harder.

Update

On 10/5, I received the following email from a Public Relations Supervisor at Six Flags Great Adventure & Safari:

We read the blog you posted yesterday regarding the changes Six Flags is implementing to its ADA access pass.

The only significant modification we have made is to require a doctor's note indicating that the guest has a disability that prevents him/her from waiting in a normal queue line. We are giving everyone advance notice of this policy change in order to minimize any inconvenience. In the situation where a young child has no photo ID, we will accept the parent’s or guardian’s ID.

The revisions to our policy are intended to benefit those that need special accommodations by eliminating the increasing number of guests who abuse our current system. Our main goal is for all of our guests to have a fun experience at our parks. You should also know that prior to the change, we consulted with various advocates for the disabled who were supportive of our revised policy and did not believe the "doctors note" aspect would raise any serious impediment for the truly disabled.

Image source: Flicker/Sarah_Ackerman

Friday, October 2, 2015

The Special Needs Blogger Weekend Link-up: Write this way


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: Some guy online was cruel, so I told his mother

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, October 1, 2015

Some guy online was cruel so I told his mother


You wouldn't think that blogging about parenting a child with special needs would incur disgust, wrath and vitriol. Yet over the years, it occasionally has. Mostly, I choose to pity the haters—what kind of pathetic human beings make fun of a kid with disability, or attack a parent trying to raise awareness and respect? Do these people even have mothers? Yes, it seems, some do. And I know because I tracked down one of their moms.

A few years ago, I made a video to explain why the words "retard" and "retarded" are demeaning and hurtful. People regularly leave comments such as "What a retard" and "He's a retard, no matter what you call him," similar to ones left here when I've written on the topic. But one comment—"Your son is retarded. get over it. jesus christ go kill yourself already—stood out, both for its hostility and because the commenter's full name and photo were displayed. Anger flared as I stared at his face. He looked to be in his early twenties. I did stupid stuff in my twenties that I regret, to be sure. But nothing hurtful or cruel, like this.

I write about Max in part to show just how much more a child is than his disability, and to help people better understand kids with special needs and be more welcoming toward them. I expect some to disagree with me when I take a stand, and that I'll encounter ignorance and prejudice. But I had a visceral reaction to this guy. Not that commenters who hide behind the wall of anonymity and spew venom are any better—that makes them cowards, too. It was just that laying my eyes on an actual hater was disturbing. It made the possibility of Max someday encountering someone like him all too real. It made my mama bear instincts kick into high gear.

Usually I just click "Report spam and abuse" and then "Hate speech or graphic violence." This time, I decided to track the guy down. Facebook friends gave me some leads, but in the end it was remarkably easy: The "about" section on his Google+ page listed his college, city and state, along with a place where he'd once worked.

In a minute, I found his Facebook page. He was in a relationship. He was now studying music at an institute. And he clearly had no problem displaying his disdain:


People have varied approaches to dealing with haters and trolls. Jimmy Kimmel has an ongoing Celebrities Read Mean Tweets About Themselves series. Months ago The Holderness family, of Xmas Jammies fame, did a Comments of Love video, setting choice phrases such as "This family makes me want to sterilize myself" to the tune of Seasons of Love from Rent (which is why they had to take it down). Heather Armstrong of Dooce created a Monetizing The Haters website, complete with noxious emails and comments she gets—and revenue-earning ads. People also hunt down trolls with tools like IP Tracker Online and other tactics, as detailed in this Forbes article.

Then again, you can tell their mothers.

I Googled around some more. This guy's parents held civic leadership and community positions and seemed like good people. I wondered if the mom might want to know what her son was up to; if this were my child, I would, no matter his age. His online nastiness could come back to haunt him during a job search. His comment was traceable to their family and could have an impact on them. And maybe, just maybe, his mother would want to let him know how awful he'd been.

Some time later, I wrote her a letter. I hesitated to send it; was I being stalker-like? But the feeling passed; I wasn't the creep. This is the note I mailed:

Dear Ms. ____,

My name is Ellen Seidman. I’m a journalist, but I’m writing to you as a mother about a matter concerning your son, ___.

I write a blog called Love That Max. Max is my son, and he has cerebral palsy and intellectual disability. Several years ago, I started speaking out against the use of the word “retard,” which perpetuates negative stereotypes of kids and adults with intellectual disability. The Special Olympics has a dedicated campaign for this, Spread The Word To End The Word. Many parents like myself—who want nothing more than respect for our children—have spread the word.

I made an awareness-raising video that I put on YouTube called "Would You Call My Child A Retard?" It’s attracted many comments over the years, including one your son left several months ago. Here’s a photo of the comment he left:




You can see it here: https://www.youtube.com/watch?v=16CxvRjx-34

I could have reported this to YouTube as "hate speech or graphic violence” or “harassment or bullying,” which is what I typically do with comments that are offensive. But this comment crossed the line, as it was both cruel and seemingly threatening. Plus, your son chose to comment using his photo and full name.    

It was simple enough to Google ___ and find information about him. I had many thoughts about how to proceed—should I contact his school and tell them? Should I contact him directly? But in the end I thought, I'm going to tell his mother. I hope she'd like to know.

If you find this unnerving, please try to imagine how I felt when I saw your son's comment. I usually don't let them bother me; I choose to pity the people who say such things. But this one has stayed on my mind.

I hope you seize this opportunity to speak with your son about respecting people with differences. Words do matter. The way we describe and talk about people with disabilities matters. My son and others like him have enough challenges and roadblocks to overcome in this world. Using respectful language isn't the answer to making people more welcoming to him (if only), but every bit helps.

Like many parents of children with special needs, I will do anything and everything I can to pave the way for my kid, even reaching out to total strangers.

An apology from your son would be appropriate. If nothing else, I ask that your son delete his comment from my YouTube video. I will not do that for him, and it will remain there until he does.

Thank you for your attention.
 
I was dubious I'd hear back. About a month later, though, I got an email from her.

She wrote that she was "sad and sorry" to receive my note. She said she has two older siblings who are deaf and that growing up, "they were frequently subjected to being teased, ignored, ridiculed and called 'retards.'" She noted, "I have taken great pains to educate my children about the importance of valuing differences and standing up for others." She told me that she'd spoken to her son about my letter and the hurtfulness of his comments. She said her son was a "troubled young man" and while she had worked to address his issues, she rarely saw him.

"Please accept my heartfelt apology for the pain my son's comments have caused you," she said.

There it was, proof that the commenter had issues—exactly what you suspect about haters. And a sobering reminder that mean people can be raised by decent parents. I felt badly for her. Yet I thought she had to know that her adult son's shameful behavior was linkable to her, and he needed to know that there are consequences. I hoped her words had an impact on him. In the end, I didn't regret reaching out to her.

I emailed back, thanking her for her apology. I said I hoped her son would soon be on a better path. "You never know, do you, what course parenthood will take," I wrote.

I waited a while to see if this guy would remove his comment. He didn't.

Months later, I went to YouTube and deleted it myself.


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