Wednesday, October 31, 2012

Tuesday, October 30, 2012

Hurricane Sandy update and kamikaze potty training

We've spent the better part of the past two days glued to two objects: the TV and the potty. The former because of the devastation that is Hurricane Sandy, the latter because we're in the midst of kamikaze potty training.

The aftermath of Sandy is grim: at least 17 dead as I write this, entire towns totally flooded, people stranded on the rooftops of their homes awaiting rescue, cars ruined, roads washed out, a major fire in Queens that destroyed 15 homes, a hospital in New York City evacuated, millions without power. I grew up in New York and I've never seen the city or trains flooded like they have been, let alone shut down. Storm damage is conservatively projected at $10 billion and up.

Our house is in an official disaster area, with power out and trees down everywhere, but we are safe and snug in a hotel and very lucky. I've felt helpless watching the news on TV, wishing I could do something. Right now a camera's following a 90-year-old who's been evacuated from her home waiting to get onto a rescue vehicle, her walker steeped in water.

The kids haven't been scared. Mostly, they were psyched not to have school, and fascinated by the whirls of wind that made the trees look like they were made of rubber. Max looked out the window this morning and reported "It stopped." He's had no issues with being cooped up inside, other than the fact that we're in the throes of potty training (again).

I had a long talk with Max's wonderful teacher last week about it. Max is totally potty-trained at school, not so at home. "Max, don't you want to be potty trained at home, like at school?" I've asked him. "Noooooooooooo!" he'd say. Something had to change, and that something was me and Dave. His teacher basically told us to go commando (well, not in those exact words but that was the gist). Just put him in underwear and deal.

She was totally right, of course. He's been dry at school since last spring, when we attempted Potty Training Boot Camp, and has made some progress at home. It's clear that he is able to feel the urge to go (take that, cerebral palsy). The main issue is that he's not adverse to wearing a Pull-up and he's codependent on us—and we've been mushy. And so, as of last Thursday, Max has been wearing only underwear, except at night. We hid the Pull-ups. Filled up his drawer with Cars 2 undies. He's been mostly going on the potty, but sometimes wetting himself.

Given that we're stuck indoors, this a perfectly fine time to potty train (and a good distraction from the news). Max doesn't like a fuss when he goes; "no 'yay!'" he informed me after he successfully peed. And so I've refrained from doing my "YAAAAAY, MAX, YOU WENT!" potty dance and I just say "Good job!" Sabrina's been saying it, too. (She had the best line of the last two days; as we watched President Obama give a press conference about Sandy she said, "I didn't know he was a weatherman, too!")

Mostly, we've been asking Max if he has to go, and sometimes making him sit there even if he says no. He doesn't care about getting Cars 2 stickers, but he did remind me that I promised him a Lightning McQueen electric car if he gets potty trained and I'll definitely deliver.

We're making potty progress. It had to be. What's a little wetness indoors during a time like this, anyway?

Photo: Flickr/mijasper

Monday, October 29, 2012

The so-called calm before the storm

• Cleared off the basement floor
• Put a bunch of stuff into the garage
• Raised up our washer and dryer onto tiles
• Bought five jugs water
• Bought lots of soup and other canned goods, along with vital provisions such as Pirate's Booty
• Stared warily up at branches of humongous oak tree that stands over driveway and wondered if any would fall

• Bought a few super-strong flashlights
• Bought Cars 2 flashlight for Max (perhaps the most critical supply of all)
• Bought batteries
• Called fire department to see if placing sandbags around the water heater might help prevent water from saturating it. Answer: not really. Also: nobody selling sandbags near us.
• Cooked up a bunch of frozen things, cause we'll probably lose power and they'll spoil
• Polished off as much ice-cream as we could
• Had small argument with SOMEONE who never got an estimate for a generator
• Snapped last fall photos on porch before it turned into a holy mess

• Took down the American flag from our back porch
• Stared warily up at humongous oak tree some more and sent it good vibes
• Stared at the water heater and sent it good vibes, too
• Called Mom to reassure her we'd be perfectly fine
• Filled our tub with water
• Lined up all our candles
• Promised kids that if we couldn't trick-or-treat Wednesday, we would another night

The calm before the storm? HA!!!

Hope any of you dealing with Hurricane Sandy stay safe.


Friday, October 26, 2012

Special Needs Blogger Weekend Link-Up: Halloween edition

It's another weekend link-up for bloggers with kids who have special needs—and this one's all about tricks and treats.

The idea

Share a favorite post having to do with Halloween. It can be recent...or not!

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I. Am. Speed.

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.

Happy linking!

Thursday, October 25, 2012

Ann Coulter says the r-word is not insensitive

Here's Ann Colter on Inside Edition, defending her tweet about President Obama being a "retard."

This isn't just about Ann Coulter, though I personally find her vile. What she's articulating is the same thing people say over and over again: "To an actually mentally disabled child, it would be mean to call that person anything. But I'm not talking about a literally mentally disabled person...."

She also noted, "I can't stand political correctness."

Yep, heard that all before. A lot.

What she and others refuse to accept is that "retard" is a slur. It demeans an entire population of people.

You think a word that refers to people with intellectual disability as stupid does much for how people perceive my son, Ann and all the other naysayers?

You should get to know a child with a disability. You should parent a child who has a disability. And then, see how you feel.

Dear bloggers: Our words change minds. See?

I've been writing this blog for four years now. It's been a joy, an inspiration, a learning experience and an effort that I've loved. Every single day, I am grateful for the community here, glad to have the opportunity to share what I've learned from raising Max, and continuously revved to spread the word about why our kids rock.

Sometimes, you get comments or emails that make you painfully aware of what an uphill battle it is to get the world to respect kids with special needs, as typically happens when I write about the word "retard." Sometimes, you get comments or emails that let you know that, yes, you have made a difference. Below is one of those emails. I'm sharing it, with this teacher's permission, to show that you never know who will find your writing—and you never know who you might influence.

There's a Talmudic saying "Whoever saves a single life, it is as if he saved an entire world." That's similar to how I feel about writing here: If I have helped just one kid or parent, then I have done a world of good. If I have gotten one person to see the awesome-ness of children like Max (and quit pitying them!), then I have done a world of good. And if I've helped a whole bunch of people give people with disability more respect? Well, wow.

I hope blogging brings you that same satisfaction. I hope your words change hearts and minds and perceptions and stigmas, for the sake of our beautiful, kick-butt kids.

* * * * * * * 


I just wanted to let you know...

I'm a high school history teacher.  I teach a senior elective called Genocide in the Modern World.  I always start the year with the Ladder of Prejudice, and this year, as my class was turned into a full year course, I was able to spend more time on things that were related to genocide but not exactly genocide.  I spent some time on hate groups in America (KKK, Neo-Conservative, Racist Music, etc).  This gets interesting for you soon, promise.

This week my students presented their projects on hate groups.  The last two groups went today, and then I started a discussion on how to react when students hear things.

Two of my big NO words are "gay" and "retarded" and I try to explain and emphasize to students why those words are so terrible to say, and why they should stop saying those words.

Today, after the last of the groups presented, I asked the class how they stop something.  I drew the Ladder of Prejudice on the board (speech, avoidance, discrimination, physical attack, extermination).  I then told the students that there's a walkway to the ladder of prejudice and it contained two steps - ignorance and fear.

I focused on ignorance.

I said that in order to prevent things like the hate groups they just presented about from cropping up everywhere, ignorance needed to be educated.

Someone asked what would be the point, if someone said something and they spoke up, it's just one person.

And it was perfect, because just yesterday I found your blog post from March 2, 2011, "If you ask people not to say the word 'retard.'"

I pulled it up on my SMARTboard and zoomed in.  I read the whole thing to them.  I had copies of it that I printed off (I removed the picture of your son) and I passed them out to students.

They were speechless.

They were impressed with your dedication.

Some said they were going to do that tonight too. (set up alerts and comment on twitter)

I saw the tweets you posted in your blog post.  I read them all.  We saw how you were discouraged and frustrated by some responses you received.

So I wanted to let you know that your post, your campaign, was just introduced to a group of high school seniors.  And they seemed inspired by it.

One student came up to me later in the afternoon and said she said something to a guy who said something about adopted kids last year (she was adopted) that had been bothering her.  She said last year she was afraid to say something, but if you could say something to strangers, she could say something to a classmate.  She said it felt good, but frustrating, and she understood what you were going through, and she would speak up from now on.

I hope you don't mind that I printed and passed out your post.  I was touched.

Image: Flickr/yoshiko

Wednesday, October 24, 2012

This is exactly why the word "retard" hurts: All together now!

So, you may have heard that after Monday night's debate between President Obama and Mitt Romney, Ann Coulter tweeted "I highly approve of Romney's decision to be kind and gentle to the retard."

Emanuella Grinberg over at CNN wrote a piece on the incident and the social media backlash, and let me speak my mind. It got some great comments including "It doesn't take intelligence to use offensive words and ethnic words.... It takes intelligence to argue your point in a reasonable and logical way. That is something Ann Coulter seems to have no capability of doing." Also awesome: This open letter Special Olympics athlete and global messenger John Franklin Stephens directed at Coulter. "I realized you just wanted to belittle the President by linking him to people like me," he wrote. "Well, Ms. Coulter, you and society need to learn that being compared to people like me should be considered a badge of honor."

As I type this, Coulter's words have been retweeted 3,248 times—and favorited 1,352 times. So many people just don't get why "retard" is a nasty word to spread around, even if it's in a political context and not directed against anyone with intellectual disability. As usual, I got a bunch of emails from people questioning what's wrong the word. A choice sample:

"I think it is simply ridiculous that words have to be excluded to appease others. I am going to say with 100% certainty that she was not looking to offend your child or any other child for that matter. The word retard while offensive if used to describe specifically children with special needs is not offensive in the context she used it. Free speech is one of the rights in this country and she should be able to say it if she wants to.... Stop being so sensitive, if it were my child and he was special needs I would take offense if someone called my child that name but I would not be offended if they used it in a context that she did.... You seem like a smart lady, you can't tell what context she used it in? We have to erase the word retard from the English language? Come on really. I am not a supporter or defender of Ann Coulter per se but I do support Free Speech even when it is vile."

The Special Olympics has created an entire campaign around the r-word, Spread The Word To End The Word. I've written and written about it, made a video, tweeted away, explained it to friends and family. Many of you have done the same. So this time around I'm giving the post over to you to explain why the word is hurtful—crowd-sourced advocacy! Feel free to link to posts you've written.

Let's make it clear, as parents of kids with special needs or parents of any kids, as family members of people with special needs, as people who have disability, just what's so wrong with this word—and why it's not just about a word and it's not about censorship or a ban, it's about respect.

Have at it.

Tuesday, October 23, 2012

A restaurant run by people with special needs: Harvest Cafe

Over the weekend, I took Dave and the kids on a surprise outing. They knew we were going to have lunch someplace they'd never been to, but I didn't tell them anything about it. Off we headed to The Harvest Café on Staten Island, New York. I'd been looking forward to it for weeks—it's a unique, very special place.

We got there at a quiet time, perfect for Max

Our waiter, Drake, couldn't have been more attentive and charming. I ordered the Pretzel Crusted Chicken Club, Sabrina had Chicken Fingers, Max got mac and cheese (it wasn't actually on the menu, but they kindly improvised). It was all delicious.

Dave had the House Special Salad, a mix of veggies, cranberries, sunflower seeds, black olives, and feta cheese, topped with ahi tuna. 

The Pouring of the Ketchup

I first found out about the café on the CNN blog Eatocracy. When we were finished eating, I told Dave, Max, and Sabrina what it's about (well, besides Good Food): "People with special needs are trained here to get restaurant jobs, and then some end up working here, including our waiter," I said. "Oh, wow, he has special needs? And he is a waiter?" Sabrina asked. "Yes," I said. "Wow! Cool!" she said.

Harvest Café is owned and run by A Very Special Place (AVSP), a non-profit that provides programs and services for people with developmental disabilities.

Staff photo with a celeb visitor

The café is decorated with artwork made by people in AVSP programs.

Max was interested in taking home a souvenir: a bottle of ketchup. 

I'd wanted to visit to show the kids that people with special needs can have good jobs. I needed to see for myself, too. These kinds of gigs are rare (although this summer I read about Tim's Place, a restaurant in Albuquerque owned by a man with Down syndrome). In general, there's a high unemployment rate among people with disabilities, 13.5% last month according to the U.S. Department of Labor, compared to 7.3% for people without disabilities. But places like this give me hope. We need more, more, more of them.

You can check out the cafés weekly menus and hours on The Harvest Cafe Facebook page; they do parties, and catering, too. We'll be back, for sure.

Meanwhile, I'm thinking the world could use a Max 'n Cheese restaurant.

Monday, October 22, 2012

On not wanting your child with special needs to look younger than his age

The Lightning McQueen costume arrived in the mail Friday, sent by It was super-cute—that face! Those wheels! That cap! I knew Max would be out of his head with joy when he saw it.

I just a hard time deciding to let him get it.

It all started in September, when we were in a shoe store. Max spied a pair of Lightning McQueen sneakers and instantly fell in love. But they were toddler size. I promised him I'd try to get them on the computer when we got home. As it turns out, hardly any store still carried ones in Max's size.

It was one of those little rude awakenings: most other kids Max's age are no longer into Lightning McQueen.

Finally, I found a pair in his size at Disney. I hesitated, for the same reason I didn't get Max those purple Crocs one summer: I don't want him to stand out from other kids. I don't want him to look babyish. The stuff he does at home that's immature for his age, like watching Mickey Mouse Clubhouse, is one thing. But going public is another; Max needs all the help he can get fitting in with other kids.

Still, I bought the sneakers, and he'll be getting them for his birthday in December.

And then, he told me he wanted to be Lightning McQueen for Halloween. (Again.) He nodded, grinned gleefully and said "YES! YES! YES!" when I showed the outfit to him on The boy wearing it in the picture looked to be about 7.

Once again, I was torn between a car and a hard place.

We've come a long way. Years ago, Max didn't want to get dressed up at all on Halloween. We let him go around our neighborhood in ordinary clothes (something that made one killjoy email me to say was rude, boring and showed a lack of spirit). In recent years, Max has gotten into Halloween. He keeps telling me that he wants to eat all the candy, which is interesting because he usually doesn't have any interest in the stuff. I suspect he's plotting to torment Sabrina, who's quite the candy hoarder.

But a Lightning McQueen costume on a boy who's almost 10? Again, I had to repress that part of me that's fiercely protective of Max, the part that doesn't want kids staring or snickering. I had to squelch the part of me that says this is what Max "should" be into at this age, and accept the reality of what he is into.

I had to let Max be Max. Or, rather, let Max be Lightning McQueen.

And so, he will be roaming our neighborhood in one glorious Lightning McQueen costume next week (along with his beloved purple bucket). And I will be there, too, watching the other kids watch him...but mostly enjoying Max have the time of his life.

Friday, October 19, 2012

Special Needs Blogger Weekend Link-Up: word!

It's another weekend link-up for bloggers with kids who have special needs. Psych!

The idea

Share a favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Will My Sister Ever Share Her Trick Or Treat Candy?

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.

Happy linking!


Thursday, October 18, 2012

On explaining special needs to a sibling: another conversation with Sabrina

"You're so smart!" I tell Sabrina. It's bedtime, and she's just aced an online spelling test.

"Am I smarter than Max?" she asks.

"Max is smart, too," I tell her.

"How is he smart?" Sabrina wants to know. "He can't talk!"

"Yes," I tell her, "he can talk. He just does it in his own way."


"Remember we've talked about the condition Max has? Do you remember what it's called?" I ask.

Sabrina doesn't remember.

"It's called cerebral palsy, and it affects how your muscles work," I explain. "There are muscles all over your body. Your tongue has muscles, too. And when you have cerebral palsy, sometimes your tongue can't quite move to make certain sounds. That's why Max has trouble saying 'p's' an 'b's' and other sounds."

"He says 'Daddy' very well!" Sabrina notes.

"Yes, he does!" I say (and hold back from pointing out that he says "Mommy" pretty darn well, too).

"If his muscles don't always work well, you have muscles in your eyes, so why can he blink OK?" she asks.

I am continuously bowled over by this child's questions.

"Certain muscles in his body work better than others," I offer, and she nods.

And then:

"OK, I have a question that's sort of about this but not! You know how if there is ever an emergency I should call 911? What happens if you and Max are home?"

At first, I'm not quite sure what she's getting at. And then it dawns on me.

"You want to know what happens if Max needs to call 911 because something happened to me?" I ask.

Sabrina nods.

Another pause, and my heart is hurting just a bit. "Well, Max doesn't yet know to call 911, but he will soon. Because he's smart," I say. "And you don't need to worry, because nothing will happen to me."

And that's that, and she goes to sleep, and then of course I replay the conversation in my head for the rest of the night. Did I say the right thing? Should I have brought up more? Did she absorb it? Did she sense how much I struggled to give answers?

These conversations are so important to me. I know Sabrina is increasingly processing what it means to be a kid with special needs, and what it means to be the sister of a kid with special needs, too (she's come a long way since she used to describe Max as "He needs special needs!"). And I want to make sure she's getting a clear message and really understanding.

I usually let the conversations happen organically, and I never force anything. They often crop up at bedtime, or when Sabrina and I are out and we see a kid with special needs. At times, I've gotten choked up, especially when we talk about Max's birth. It remains my biggest tender spot.

I fell asleep thinking that I did the best I could—my usual approach toward raising a kid with special needs.

Wednesday, October 17, 2012

The kid with special football powers who's making headlines

You've seen his handsome face before—maybe in the news or in the slideshow of awesome kids I did over the summer, or perhaps on his blog: I Have Cerebral Palsy...So What, I'm Still Awesome! Eighth grader Jack McGraw of St. Charles, Illinois, has been at every game and practice of his school's football team, the Hurricane Haines, in the past two years. Earlier this month, Jack made news when he scored a touchdown in the final minutes of a game.

"I felt so good," Jack wrote on his blog. There were even people crying!!! At first I didn't get why it was a big deal but people said I inspire them and that they are so proud of all the boys for treating me so great. I'm glad if I have made people feel good."

Jack's mom, Jill, shared a letter that the dad of one of the boy's on the team sent the local paper. As he wrote, "A person might think this was just about giving Jack an opportunity he normally wouldn't get. However, it was really just the Hines coaches and team (with the the help of Batavia) saying thank you to a young man who has provided inspiration and support as a teammate all throughout middle school. Contributions to a team can come in a variety of forms and truly transcend the importance of the game itself. Jack has certainly made more than his share of contributions...."

Jack, 13, attends Haines Middle School, studying the same curriculum all other kids do. He uses an ECO2 with eye-gaze technology from the Prentke Romich Company and computer for communicating doing schoolwork.

"I've always felt that to some degree, if you treat a kid like he's just like every other kid, he'll be just like every other kid," says Jill. "We celebrate Jack when he is being his smart, funby, caring self, and he gets in trouble when he's being 'difficult,' just like his sister. Life is wonderful and I just feel so blessed to have two incredible children."

I got the chance to ask Jack a few questions; here's what he had to say.

That was one awesome touchdown! Max loved seeing it. Can you tell me when you first got interested in the game?
I first loved football when I was in first grade and the Chicago Bears played in the Super Bowl in 2007. They lost to the Colts and I was heartbroken!

What sort of things have you gotten to do as a member of the football team?
I got to call plays a few times. I mostly get to be with the team and cheer for them.

What was going through your mind when you were rolling across the field with the football in your hand?
Oh my gosh! I can't believe this is happening.

What are your favorite things to do for fun?
I like to play football and basketball with my friends. I also love to play xBox, watch movies and eat!

What's your favorite subject in school?
My favorite subject is Social Studies. I like it because it is really interesting and it is the easiest.

I love the name of your blog! What things would you like people to better understand about kids with cerebral palsy?
I want people to understand that CP isn't that bad. You can still be a regular kid if people treat you that way. We are just kids with regular feelings, too.

What would you like to do when you grow up?
I know this won't happen but I want to be in the NBA. My mom says I could do it, just not as a player. If that doesn't work out, maybe I will make a disability organization.

Is there a celebrity you'd ever like to meet?
I would love to meet Derrick Rose from the Chicago Bulls!!! He is so awesome. He is the best basketball player and was the youngest MVP ever. He actually replied to me on facebook once. It was so cool. I like him because he's really good but he is humble.

Why do kids with cerebral palsy rock?
We rock because we are awesome! We work hard and like to have fun just like everybody else.

Photos/Jill McGraw

Tuesday, October 16, 2012

The boy who could

We went to a festival on the weekend, one that had lots of games for kids. There were these really cool giant plastic balls kids could get inside and roll around in.

Sabrina decided to give it a go. She let Max in with her, only he had trouble keeping his balance. When I pulled him out, he decided to help push Sabrina around, which I'm sure deeply satisfied him in many ways.

When Sabrina's turn was done, Max immediately ran over to an empty ball and started pushing it around.

Max wasn't dispirited that he hadn't been able to roll inside. He just knew to find a way to have fun.

This is one of the kajillion things I adore about Max, this determination to do. It's something that may be hard to understand unless you are the parent of a child with special needs:

Our kids do many of the same things so-called "typical" kids do—they just do them in their own way.

It doesn't mean our kids have less fun than other kids.

It doesn't mean our kids are missing out.

It doesn't mean our kids enjoy life less.

It's just how they roll.

Friday, October 12, 2012

Special Needs Blogger Weekend Link-Up: Ready, Set, Post!

It's another weekend link-up for bloggers with kids who have special needs. Are you having fun yet? I am.

The idea

Share a favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: All I Want For Christmas Is My Own Amtrak Train!

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.

Happy linking!


Thursday, October 11, 2012

World's yummiest healthy mac 'n cheese: for Maxaroni, with love

Max has a  new nickname, and it is Max 'n Cheese. He also answers to Maxaroni 'n Cheese. Yes, the spaghetti phase is history. These days, Max could eat mac 'n cheese for breakfast, lunch and dinner. And, in fact, he has.

If you happen to be wasting your life away on the computer late one night, you might happen to create some food labels you can slap on boxes in your pantry that will make your child think you are a Cool Mom.

In the scheme of foods, I think mac 'n cheese is a decently healthy choice. It's also a very easy food for Max to chew, and feed himself, because of the gloppy texture. He scoops the bowl clean—no leftovers for Mommy!

Turns out there's a way to make it extra-nutritious—and NOT noticeably so! My friend Betsy, master of all things healthy, recently shared a recipe she found by Food Network star nutritionist Ellie Krieger, host of Healthy Appetite. It's called Macaroni and 4 Cheeses. It's partly made with frozen pureed winter squash, which is orange so it blends right in.

Max calls it macaroni and cheese pie, and asks for it regularly. It his his new Favorite Dish in the Whole Wide World. He can practically eat his body weight in the stuff.

I don't think Bon Appetit will be hiring me to do food photography anytime soon

Sabrina has the more discerning palate of the two. "What did you think of the macaroni and cheese?" I asked, casually, after she'd tried it. "Oh, I have macaroni and cheese all the time!" she informed me.

Fooled both kids! Yeah!

Enjoy. And if you have a favorite healthy mac 'n cheese recipe you've found online (or, OK, even a sinful one), by all means, share a link!

Wednesday, October 10, 2012

Kids With Special Needs Around The World: Germany

This post is part of the Kids With Special Needs Around The World series; so far, moms from Ireland, Chile, Greece, England and Sweden have all shared what it's like to raise a child with disabilities in that country. And now, Germany!

Hi there! My name is Beate, I am 38 years old and an office manager; I live in Germany with my son, who just turned five, and my husband. At the moment my son's diagnosis is “global developmental delay” or “linguistic-cognitive developmental disorder," which is very vague. The reason for his delays is unknown. Numerous genetic, chromosomal, and metabolism tests came back negative. 

I had a planned c-section so there were also no incidents during birth like lack of oxygen or anything else. However, he was always too light already during my pregnancy, and was born at 2455 grams [5.4 pounds] due to a probable placenta insufficiency. One of our doctors assumes the reason for the delays to be of genetic origin, but then again it must be something that has not been discovered yet or something extremely rare. 

My son is delayed in all areas, but the most significant area is his speech since he only speaks about 5 to 8 words. Apart from those he communicates with (sometimes his own) signs and sounds. At the moment we are evaluating various AAC devices in order to support him better and give him the possibility to express himself. Nevertheless, a diagnosis would not change too much for me because he is who he is. I love him to pieces and support him in the best way possible, concentrating on his specific needs.

I have been reading American blogs for a long time, and when I learn about the problems people are facing in the United States with regard to their health insurance, I start becoming very content with the situation in Germany. Our family—like 85% of the German population—is part of the compulsory health insurance (the alternative is a private medical insurance mainly only open to high-earners or self-employed persons). The compulsory health insurance covers all our costs for visits to doctors and specialists, hospital stays, rehabilitation, treatments at a health resort, therapies etc. We had numerous hospital stays already and were always given the best treatment and we would have never been sent home for insurance reasons if our son had still been ill.

The “centre of our universe” is our pediatrician. She prescribes medicine, refers us to the specialists and to the hospitals. She also decides whether or not my son's needs and will be granted therapies. Therefore, it is essential to find a good pediatrician who understands the needs of your child and works together with the parents as a team. If you are not content with your pediatrician, you can simply go and see another one since they are independent of any health insurance company. You have free choice of medical practitioner in Germany.

As soon as our son was born he was shortly after taken to his first so-called “U examination” (U is the first letter of the German word for “examination”). They are carried out in defined intervals you have to attend with your child, e.g. directly after birth, the next one between days 3 and 10, then again between weeks 4 and 6 and so on. Each examination has a specified goal, like the check of mobility and the ability of coordination as well as reflexes, muscular strength, articulation, and dental records are examined at the U8 (46th to 48th month). The reason for these examinations is to find possible defects or diseases endangering the normal physical or mental development of a child as soon as possible in order to start necessary therapies quickly. In our case it became clearly evident from U5 onwards that our son was not meeting the specified goals but that he was delayed and missing almost every milestone.

We are owners of a “severely handicapped pass” issued and granted by the state in order to serve as a proof for the claim of certain rights and disability compensations. It ranges from minimum 50% up to 100% degree of handicap. It also contains certain letters which are called “markers” and which inform about health issues of the pass holder, making him eligible for different compensations. For example, "H" means "helpless." Among other things, H enables the holder to use all public transport free of charge. Due to the pass there are a lot of places where we are granted free entrance or reduced entrance fees and free entrance for me as the accompanying person like the swimming pool, the zoo etc.

Another thing that we are granted by the health insurance company is nursing allowance. You have to apply for it and there are three stages. It is for people who care for a relative, be it a special needs child, a husband who had an accident or aged people like your mum and dad. Depending on the stage you are assigned to you are paid a certain amount each month in order to help you financially since you might not be able to work full or even part time.

My son is in a special education kindergarten. The German school system is more or less tripartite: There are regular schools, integrative schools (with a certain amount of kids with special needs per class), and special education schools. Homeschooling is not allowed in Germany. Concerning inclusion, there is still a looong way to go. As of 2013 every child has the right to attend regular schools. Right now you must be very lucky to find a school that supports inclusion to have your child attend it. But no one really knows how this will turn out in reality next year as there are still so many questions open regarding the education of teachers and all the necessary changes in the school system and challenges that come along with inclusion in regular schools, like adapted curricula, school escort and so-called “integration escorts."

Many people shy away from contact with kids or adults with special needs because they are unsure of how to react. And yes, we also get THE LOOK here in our country as well. As an example, I hate being in the waiting room of our pediatrician with lots of other moms and kids my son’s age. As it is not clearly visible why or even that my son is different, I get the “Oh, that kid is so spoiled, why does he behave like this, I bet that’s due to bad parenting” look so very often and that is something I still have to learn how to handle. So I guess this is quite similar to what you are experiencing in the United States. Since Germans, generally speaking, are not really very open towards people they do not know, hardly ever anyone comes up to me and asks me about my child.

Raising a kid with special needs is often hard. It is exhausting, often isolating, sometimes sad and frustrating. But, even more so, raising a kid with special needs is so rewarding. It has made me more tolerant, more aware of and grateful for all the accomplishments my son has achieved. Sometimes when I watch my son I am still so in awe that he can sit upright by himself or that he can walk. I take nothing for granted. I note every single new thing he can do and I make a big event out of it. I enjoy the small and good things in life much more now. I value good health much more than I did. And I love my son limitless, with every ounce of my being, with every fibre of my heart and with every bit of my soul.

Tuesday, October 9, 2012

Oh, happy day: Max lied to me

So, we're still in the throes of potty-training at home. Happily, Max is fully trained at school. At this point, it's a battle of wills (Max's, Dave's and mine) and codependency (Max's).

The other night, before bathtime, I asked Max to sit on the potty. He did, grudgingly.

"Gooooooo!" he said, pointing to the door.

He wanted me out of there.

I left, but hovered in the shadows.

Max got up after about 30 seconds. No tinkling sound whatsoever, at least that I could hear. I watched him peer out the door.

"Max, did you go?" I asked, startling him.

"YESSSS!" he said. And then, as I walked toward him, he turned around and flushed the toilet.

Now, I guess he could have gone very softly, except (to be graphic) there was no pee on the seat as there usually is.

Max was trying to pull a fast one on me.

As warped as it may sound, it made me a little happy. You need a certain level of cognition to be wily like that, and Max had achieved it. He knew he needed to cover up his tracks (or lack thereof).

I stared at him. "Max," I said, "I am not really sure you did go in the potty. I am not sure that's the truth. But I know you will go tomorrow!"

And I left it at that. Now, if tomorrow he tells me that he's not the one who finished all the chocolate ice-cream, he's gonna be in trouble.

Monday, October 8, 2012

Sometimes, we are THAT special needs family (again)

We hung out at The Bronx Zoo on the weekend, an amazingly wooded retreat we all love to visit. The Siberian tiger cubs, about a month and a half old, were awesome.

The line to get onto the Wild Asia Monorail was seriously long. We waited a bit, but Max started shrieking because he was freaked by the crowds. So Dave asked the attendant if we could move up and she let us. I had no problem with asking because the alternative was for us all to leave.

Max kept on wailing, but we knew he'd like he ride once he was on it. A few minutes later, a train came in. Max has a thing about sitting in corners and last cars—it's comforting to him. And sure enough, he wanted to go in the last car. We didn't have that choice, so Dave toted him into the car directly in front of us, which made Max extra upset. As the ride started, Max was half-standing between Dave's knees, holding onto the railing and crying. I sat in the back with Sabrina.

Tour guide: "Everyone must be seated. Are you listening, Car Number Three?"

I peered down the line of cars. I didn't notice anyone standing. The train went on and Max calmed down. We saw a red panda, a great big hippo, a herd of antelope. The elephants pooped right as we passed, which Max seriously enjoyed.

"Rules are not made to be broken, Car Number Three. Everyone must be seated," said the tour guide, and the train came to a stop.

This time, Dave yanked Max down.

Oh. Car Number Three. Us.

The guide had every right to be stern. Last month, an emotionally disturbed guy jumped off the train into the tiger den. He wanted to be "one with" the tiger.

I used to be a law-abiding citizen. Then I had a child with special needs. And while Max hasn't exactly made me resort to a life of crime, I do on occasion bend rules. It's called survival of the sanest, because this is what we need to do so our family can actually enjoy things.

The train glided on. Suddenly, Max was pointing toward me. He wanted to sit in the back row.

"No, Max, we can't stand again," I said. "It's a train. We're not allowed to stand."

He started tearing up, and shaking his head at the river we were about to cross. Max freaks out about bridges, and I realized he was getting scared.

"Quick! Switch!" I said to Dave, and he helped Max to the back so I could grab him as Sabrina zoomed to the front.

Max pointed to Dave. He wanted him in the back with him, not me. I glanced at the guide, who was eyeing us warily in the rearview mirror.

"Quick! Switch!" I said, and we did. I was starting to feel like a quick-change-artist circus act.

Tour guide: "I don't know WHAT is up with Car Number Three!"

I felt sheepish. But there was nothing I could do except sit back and enjoy the rest of the ride. And I did.

Friday, October 5, 2012

Special Needs Blogger Weekend Link-Up: Oktoberfest!

It's another weekend link-up for bloggers with kids who have special needs. Sort of like Oktoberfest, but without the beer.

The idea

Share a favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Can Eat My Body Weight In Mac 'n Cheese

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.

Happy linking!


Related Posts Plugin for WordPress, Blogger...