Saturday, July 31, 2010

The Fruit Lady lives on

We're in the car, driving to Sesame Place. Right before we walked out the door, I grabbed a bunch of peaches and plums from a bowl that sits on the kitchen counter. "Everyone needs to eat more fruit!" I announced. And then I thought, wow, I am so turning into my mom.

Growing up, my friends called her The Fruit Lady because whenever they came over, within seconds she'd offer them a piece of fruit. And now, here I was, pushing peaches and plums.

I am generally more like my dad than my mom, so realizing I've picked up some of her quirks amuses me. Like her, I am nutty about keeping the kitchen clean. I don't put top sheets on the bed (Mom: "Who needs the extra laundry?"). I make lots of to-do lists. I must have lipstick on when I leave the house, even if I have on no other makeup. I am a sucker for babies and speak uninhibitedly to them in gibberish. I like hipster undies; mercifully, I did not inherit her house robe gene.

Which quirks and habit have you picked up from your mom?

Thursday, July 29, 2010

Misconceptions people have about parents of kids with special needs

There are lots of misconceptions out there about kids with special needs. Over the years, I've heard everything from "Does he like to be around other kids?" to "How can he have cerebral palsy and walk?"

I think people have misconceptions about parents of kids with special needs, too.

Sometimes, I get the distinct feeling that....

...people think I must be a super-nice person because I am raising a kid with special needs. OK, those of you who come here regularly may have gleaned that I am not evil, but there are far nicer people in the world than me. Maybe billions of them. Once, I even killed a goldfish. Also? I didn't have a choice in the matter: I got a kid with special needs. Of course I'm raising him and doing my best to help him along. That doesn't make me super-saintly. That makes me a mom.

...people mistake me for Penelope Cruz.

...people think I have endless amounts of patience. Actually, I work hard at that. I've always liked things done quickly. You can imagine how nuts I drove my parents growing up ("ARE WE THERE YET? ARE WE? WHEN WILL WE BE THERE? HOW LONG IS TWO HOURS? ARE WE THERE YET? ARE WE?") And then I had Max, a kid who is going through life at his own pace. That took a whole lot of getting used to. Still working on the patience thing. Are we there yet?

...people think my life is filled with sadness. Although it was a lot more so in the first couple of years after Max was born, and I still have flashes of grief, I never sit around feeling sorry for him—or for myself, either. Except when my pants won't quite close.

...people think they need to be extra-careful about what they say around me. Especially moms of typical kids, who might not think we have much in common. I may have to deal with things they don't (therapy, neurologist, medications, blah, blah) but there's plenty of regular-parent stuff I juggle—a kid who'd like to eat chocolate ice-cream 24/7, a kid who always wants to play on the computer, a kid who fights with his sister. Word: Feel free to joke with me about Max's purple obsession and car washes, just like you'd joke with another parent about their kids' quirks. Because it's funny, not sad. It's OK to treat me like I have a "typical" kid. In many ways, I do.

Do you ever feel people have misconceptions about you as the parent of a kid with special needs? How so? If you don't have a kid with special needs, have you ever made assumptions like these about other parents?

Let's hear it for our kids' therapists!

This is the message I got tonight from the speech therapist who works with Max at his school:

Hi Ellen,

You probably hear this a lot but it's always nice to hear -- Max is an absolutely amazing kid. He lights up when he sees me, but he always brightens my day. This week, he's been trying so hard to not side swipe the spoon on his cheek, but pull it straight out. He feels so happy when I get excited for him. He amazes and is so smart. He found Sesame Place by showing him 1 time on the ipad. I just don't think I tell families enough how special (in a good way) their kid is and Max is definitely one of them. I'm lucky to work with him!

I bawled.

I have to admit, I tend to take Max's therapists for granted. This e-mail reminded me what a special breed of people they are, and how much of a difference they have made in Max's life—especially his quality of life. He would surely not be doing as well as he is if it weren't for the thousands (yes, thousands) of sessions he has had in the hands of passionate, caring, dedicated, enthusiastic, knowledgeable, resourceful therapists.

That's baby Max above at a holiday party with Nafeesa, the occupational therapist who started seeing him when he was a month old and has been coming to our house twice a week ever since. Back then, she and Max's physical therapist were often my therapists, too. They'd patiently hear out my anxieties and while they weren't ever falsely optimistic, they gave me hope. And told me how cute Max was.

This speech therapist at Max's school is the one who got us to trial the iPad and the Proloquo2go app. She typically answers questions I email her the same day she gets them. If she doesn't know an answer, she researches it. She is open to suggestion, but also has firm opinions of her own. She is a huge champion and cheerleader for Max. Tonight, I feel so grateful for her.

Which therapists in your life do you most cherish?

Tuesday, July 27, 2010

The best advice I ever got about raising a kid with special needs

I got the following gem years ago from our beloved pediatric neurologist. Max must have been about two. I can't remember the context—I am sure I was reeling off some string of anxieties about what the future held for Max—when Dr. C said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."

So simple, yet so monumentally helpful. He was right: stressing about what Max would "be" like was futile because a) nobody knew and b) being anxious and fearful wasn't going to do Max, me or anyone in the family much good.

Sometimes, I will literally just stare at Max and mentally list his latest accomplishments, whether it's saying his sister's name more clearly or feeding himself a bowl of chocolate ice-cream. Sometimes, I'll think about something he is doing today that he wasn't doing a year ago or even a month ago. Sometimes, I'll watch him struggle to do something—say, grasp a crayon—and even if my heart is sinking, I will yank it back up by mentally chanting, "LOOK at his determination. LOOK." Yeah, I talk to myself.

I can't always follow Dr C's advice—there are times when nothing keeps the worries out—but for the most part, I can. Focusing on Max's present keeps me grounded. It's alleviated the stress. It's helped me accept the cerebral palsy.

The reality of Max, when I set my mind to that channel and stay tuned to it, is awe-inspiring.

What is the most helpful piece of advice you ever got about raising a kid with special needs—from an expert, a friend, your mom, whoever?

Photo/T. Rex

So, this boy walks up to a bar and...

...his name is Max. And it just so happens the pool bartender is making slushees. And she has grape.

"UR-UL!!! UR-UL!!!" Max says.

As his faithful translator, I do my job: "He is really into purple," I say, "and he would like a purple slushee."

Max watches with glee as she proceeds to make said purple slushee. First she goes to pour a batch of ice into one of the blenders.

"Nooooooo," says Max, and he gestures at the empty blender standing next to it.

"He would like you to use the other blender," says his faithful translator.

The bartender looks a little perplexed, but it passes; surely she has heard all sorts of requests over the years, and at least this customer isn't inebriated or slurring his speech. OK, he IS slurring his speech but that's a whole other story.

She switches the ice to the second blender.

"Noooooooo," says Max, because he can be quite fickle that way.

"He'd like you to put the ice in the original blender," I say, matter-of-factly.

She switches blenders, no questions asked. Then she pours in the grape concoction and starts the whirring. Max is mesmerized. I am, too; a blender pulsating with purple is a wondrous site. Better even than lava lamps or other stuff we'd stare at in college when we were in a certain state.

Once it's slush-ified, she pours it into a cup and hands it over. Max literally does a Purple Slushee Happy Dance. He has to be the happiest customer she's had in a long time, despite the fact that she did not even put a tiny umbrella in there.

"UR-UL!" Max says, happily, and I give him a sip.

Ur-ul slushees rock.

Sunday, July 25, 2010

Special-needs parent epiphany #356,972: It's OK to enjoy the lingering baby-ness

Max has two new friends: Max and Ruby, of the TV show fame. We were in an ice-cream store this weekend and they had a whole bunch of cuddly creatures for kids and their sucker parents. I hadn't known Max likes the show so much—he sometimes watches it in the morning—but he grabbed Max and Ruby, and made a dash for the door. We caught him before he could start a life of crime.

"Max, we have to pay!" I said, and he nodded, gleefully. How could this sucker parent say no? I was actually thrilled to see him using his right hand, his weaker one, holding a toy. Also, Ruby and Max were better than the Plankton doll (of SpongeBob SquarePants fame) Sabrina originally wanted; she settled for Silly Bandz.

As Max wandered down the street, I noticed a few people staring. The dolls definitely made Max look a little baby-like. In the car, he started babbling at Ruby and Max. We had no idea what he was saying to them—most likely, it wasn't "I totally intend to pay back Mommy and Daddy for the ridiculous amount you cost!"—but I didn't care. I loved hearing Max using his voice, playing with sounds and powering up his imagination.

At home, the Ruby and Max and Max lovefest continued. He propped them on pillows in the living room, he stuck them in trucks, he asked Dave to pretend to brush their teeth, he put them to bed.

What occurred to me, now that the kids are asleep and I have actual time to think, is how much cuteness I still get to enjoy with Max. When he was very young, I missed out on the babbling and playing with stuffed animals stages because back then, he couldn't enunciate many sounds or clutch things. I might not have fully appreciated them even if he had been able to do them; I was always so worried about what the future held for Max that I neglected to savor the yummy boy right in front of my face.

So I get to have these moments with Max now—and I fully intend to savor them. They may be infantile behaviors but they are signs of progress. And boy, are they cute.

Friday, July 23, 2010

The sun, a sprinkler and a whole lot of joy

Does it ever amaze you
how good it feels
to see your child so excited
by the simplest of things?

Thursday, July 22, 2010

Please spare us the pity stare

I know why you are giving us that look.

You feel bad for my child: Poor little boy. He is so cute, too bad he has some sort of disability, which is clear to see because he is drooling. He can't quite use his hands. He walks a little different. Oh, how sad, that poor, poor kid.

You feel bad for me, too: Poor woman, she has a child with special needs. Her life must be so difficult.

But that sympathetic look you are giving us is making me uncomfortable.

Believe it or not, I do not actually consider either of us worthy of pity. My son may not be your idea of "typical" but he's still an awesome kid. I don't want him to grow up feeling pathetic. He needs confidence, and lots of it. He deserves respect and dignity, hold the pity. Same goes for me. I am perfectly content with this child of mine. He's beyond adorable, he's bright, he's got a huge personality, he makes me laugh, he gives me tremendous pride in his accomplishments—you know, just like any other kid. I'm not saying my life is easy. I'm not saying that I don't cry over what happened to Max. But we have ourselves a good life. A life not to be pitied.

I know, I know: you don't mean to stare at us piteously.

Maybe next time, though, you can catch yourself doing it, stop and just treat us like any other mom and child. Or maybe you could encourage your child to say hello to mine? That would be ever so much more humane than the pity stare.

This post is for the July 24 blogging event People First: Empowering People with Disabilities, sponsored by Bloggers Unite.

Tuesday, July 20, 2010

Special ladies who lunch at, contest alerts

So, for those of you who are going to BlogHer, here's something you should know: lunch will not look anything like the above. But I am organizing a "Birds of a Feather" lunch on Friday (which goes from 11:45 to 1:15 p.m.). This will follow the 10:30-11:45 panel "Blogging Autism: Shattering Myths, Opening Eyes and Finding Your Tribe" moderated by Shannon Des Roches Rosa of Squidalicious and featuring Jean from Stimeyland, among others.

Here's how to sign up for the lunch: At registration, I'll put the topic on a clipboard—"A lunch for parents who blog about kids with special powers"—and then you guys can just sign up and show up. The wonderful Julia from Support for Special Needs thought of doing a giveaway, so we're pairing up to offer AmEx gift cards, and a couple of Starbucks ones. Or you might win your very own personal blogger (PB)! So, you know, you no longer have to waste your time writing posts; your PB will do it for you! Just think of the possibilities! And if your PB makes jokes about your MIL, YOU are not to blame!

I would love to meet those of you who are going to BlogHer. And if you're not coming, we will be there representing the special needs community, and we promise not to embarrass you. More or less. We will also have a drink for you at the parties. Or ten.

Now, FYI on some cool contests/giveaways:

This week, Paula Deen and Kraft kicked off a Real Women of Philadelphia recipe contest: they're giving away $40,000 in prize money ($500 a day). You just have to submit your fave recipe made with Philadelphia Cream Cheese. The contest is open to both women and men, so perhaps this is a ripe opportunity to get your husband cooking. Or you could make your own Personal Blogger whip up something, if you win one.

Janet "Grammy" Harold, grandma to the adorable Hailey, is having a "How Does YOUR Garden Grow?" contest. She owns Cedar Grove Gardens in Boston, and she'll be giving away $500 in flowers to the winner (you can enter from any state). Just send up to four images of your beautiful garden. Given that I posted pictures of lilies last week and called them irises, and those are about the only flowers that look good, I will have to skip this one. Heads up, Janet is also a beautiful painter, and is offering special pricing on oil portraits of children to help raise money for therapy for Hailey, who like Max has cp.

Oh, and you know I am giving away a $100 shopping spree from Fun and Function, which offers toys, games and clothes for kids with special needs. It ends tonight—why haven't you entered yet? There is also a Kleenex tissue giveaway, couldn't ya use some Kleenex?

Also, that big Parents Connect Best Parenting Blog Award I am up for? If you vote, and you can vote daily till August 31, you will be entered to win $1000. Not that you need financial incentive, right? RIGHT?

I know there are a million blogs out there that list contests or giveaways, but you are doing one, or know of any great ones—especially ones relevant to kids with special needs—e-mail or tweet me and I'll mention them.

Apologies for the shameless self promotion, it's not my fault. I am testing out a Personal Blogger and she wrote this post.


P.S. Update on that birds-kicking-the-bucket situation: At work today, I got an e-mail from Dave with a picture of an ailing bird sitting on our deck. I am not completely sure what Dave wanted me to do, given that I was in an office tower, and in a different state. The bird eventually managed to fly away. Bird mystery continues. Maybe my PB will be able to help.

What's going on inside his head?

This weekend, we were driving around when Max got excited and started saying "ARRRR WAHHH!!!" ("CAR WASH!!!") over and over. Dave and I had no idea why. We kept driving. Max got more agitated. Finally, we stopped the car and let him direct us to where he wanted to go. His gestures lead us to a car wash. He'd been there with Dave a year ago, and he remembered exactly where it was. Amazing. He has an incredible visual memory.

Max's brain is, in many ways, a mystery to us...and to doctors too. We know the bilateral stroke he had at birth damaged several parts of his brain: the parietal and occipital lobes, and part of his frontal lobe. His brain stem—which controls vital functions like breathing and blood circulation—was spared. We don't know what sort of healing has taken place because we haven't had an MRI done since Max was a few days old, that turning point in my life when I first learned that a child could have a stroke. And that my baby boy had a stroke.

We agree with our neurologist that doing an MRI at this point isn't necessary. If Max's brain looks a lot better than it did in the horrifying MRI film from the hospital, that would be nice to know. But it wouldn't change the therapies he receives or how we treat him. And if Max's brain still looks really messed up, well, that would devastate me, and what good would that do?

So when Max shows us his smarts, as he does every day, I marvel at his brain. Yeah, the damage has done a number on his ability to talk and use his hands. But there are plenty of kick-ass cells in there doing their thing. I'm not sure if the stem cell infusion has helped, but whatever is going on, I'll take it.

At the same time, it's clear that Max doesn't quite get some things, and I want to understand why. Does it have to do with the parts of his brain that are damaged? How, exactly, are they affecting his intelligence and comprehension? One of the biggest things I wonder about is why Max doesn't notice when other kids stare at him or say things like "Ewww, you're drooling." He also doesn't always understand how to connect with kids. Sometimes, he'll pretend he's a monster and he'll run after kids and roar, but even when kids seem annoyed or scared, he doesn't stop. (Then again, who knows, maybe he's just got an obnoxious streak.) I also wonder why he has such trouble grasping concepts of time, like what "next week" means. Or why he likes to repeat stuff again and again.

I'm thinking of taking him to see a developmental psychologist. It's not that I want to get him tested to find out what developmental level he's at or what his mental "age" is; I long ago quit torturing myself that way. I just want to better understand the way his brain works.

What do you wonder about what's going on inside your child's head?

Sunday, July 18, 2010

A fun trip, school-prep tips and a Kleenex giveaway

I am not the type of mom who carries tissues in her purse. I am lucky if I remember to take the house keys. So I was thrilled to get invited, with Sabrina, to Bowling Green, Kentucky for a "Hands-On-Learning Event" courtesy of Kleenex Sneeze Shield tissues and The Motherhood. My mission: Meet up with other bloggers and their five-year-olds, and hang out with award-winning kindergarten teacher Patrice McCrary. Together time with Sabrina, guidance on how to make the transition to kindergarten easier, info on battling germs, a sponsored trip—what could be bad? Also, I figured I could maybe get tips on remembering to keep tissues in my bag.

Sabrina's ears were bothering her during the flight, so William the flight attendant told her to blow into two cups until they were warm and then put them over her ears, to equalize the pressure. Sabrina said it worked, but I still think he was pulling our leg.

The fun started with a ride in a white stretch limo (which Sabrina called "the long-long car"). She BYO'd ice-cream.

Kentucky readers, I would have loved to meet up but the only time I veered out from the lovely Holiday Inn we stayed in was to go to William H. Natcher Elementary School.

That said, I did stand in the parking lot a few times checking out the Corvettes—this weekend was the 29th Annual Corvette Homecoming (Corvettes are exclusively made in Bowling Green).

In our hotel room, a gift bag awaited us with packs of tissues. Now I had no excuse to not have tissues in my purse. And I had something to give to Dave, because I couldn't bring him home a Corvette.

At dinner on Thursday night, I picked Mrs. McCrary's brain for a persistent problem I have: Sabrina interrupting me when I'm talking with other people. Mrs. McCrary's solution: Teach her that when I silently hold up one finger, it means I will be with her in one minute and she has to wait. Genius because it means I don't have to interrupt my conversation to tell Sabrina to hold her horses.

As Sabrina was running around with the other kids, she somehow hurt her thumb and started wailing. Mrs. McCrary stooped down, held her hand and said, "This is what I would say if I were a doctor: That your thumb needs four and a half rubs. So let's do that, and you count the rubs with me." And as Mrs. McCrary stroked her thumb, Sabrina counted "One, two, three, four." By then, she was totally calm.

I thought it was a fantastic trick, but I thought it would be even better if I could take Mrs. McCrary home with me.

Friday morning, we headed to school. On the bus, a kid needed a tissue. Oopsie. I had left them at the hotel. Still not A Mom Who Carries Tissues In Her Purse.

The fantastic bloggers (and their cute kids!) on the trip included, from left, Becky from Nickels -n-Dimes (a total sweetheart who brought classroom supplies to donate); Niri from Mommy Niri (SO funny); the fabulous Mrs. McCrary; Tara from Deal Seeking Mom (I was in awe of her before I met her, the woman has five kids ages 2 to 8 and, wow, is she calm); and the very cool Jamie from Blonde Mom Blog

The classroom was really well set up. I haven't been in a kindergarten class since I was five, and memories flooded back. I loved my kindergarten teacher, Mrs. Goodman. I loved her so much I'd poke her hip all time to get her attention. At the parent-teacher conference she told my mom, "Ellen's a great kid, but she makes me black and blue."

Everyone sang a cute "Hello Neighbor" song to kick things off and Mrs. McCrary read "Germs Make Me Sick!" Then we got a little lesson on germs. Research shows you're more likely to attract the buggers if you don't completely dry your hands. We did a little experiment in which the kids all washed their hands but the boys didn't dry theirs completely ("Because they don't do it anyway," noted one dad). Mrs. McCrary had a special light thingie that made germs glow in the dark; the boys had more. All this is why the Kleenex people put a coating on their tissues, Sneeze Shield, which helps prevent gunk from getting on kids' hands when they wipe their noses. I'm hoping it also protects you when your kids shove their used tissues into your hands because they think you are a human garbage pail.

The kids made crafts, including Play-doh germs. Sabrina gave hers hair.

Then they played this cool game, Don't Catch A Cold, where you got to zap germs. Later, we had a chance to ask Mrs. McCrary questions while the kids ate lunch. I wanted to know how to better connect with Sabrina when she starts kindergarten and I'm at work and can't greet her. Mrs. McCrary suggested she talk into a computer cam or tape recorder about her day when she gets home, and we could listen it together at night. Loved that.

I had to laugh at Mrs. McCrary's tactic for dealing with tattletales. She has a photo of President Obama hanging in her class and when kids want to tell on someone, she says "Go tell President Obama." After recess, she says, there's a line at Obama's photo.

One total eye-opener was Mrs. McCrary's thoughts on what happens when you go around saying, "I can't believe my baby is starting kindergarten!" (GUILTY!)

"And if they worry you're having more fun than they are?" asked Niri. "Don't tell them!" said Mrs. McCrary.

Her advice on getting kids prepped for kindergarten—and keeping them happy in school—works for kids of all ages:
• Two weeks before school starts, ease kids back into a routine by having them go to bed and wake up ten minutes earlier than the previous day. For kids who won't go to bed on certain nights, she had this negotiation tool: "I'll give you 15 extra minutes to stay awake, but you have to have a book in your hand. If you don't, we're turning out the lights."
• Plan out a weekday's worth of outfits with the kids on weekends (check The Weather Channe, a good teaching opportunity), and place shoes and backpacks by the door every night.
• Create a reading basket. A lot of the fun of learning is anticipation. So every night, have your child pick out several books she'd like to read when she comes home from school. It's also a good way to give kids chill-out time.
• Instead of asking your child, "What did you do at school today?" and getting that shoulder shrug, ask specific questions. And request a schedule from the teacher, so you know how to gear your questions. For example, you can ask "What did you do at reading today?" "Who did you play with at recess?" and "What did you do in PE?"
• The best gift for teachers: Send occasional thank-you notes throughout the year. As Mrs. McCrary said, "They will go 100 miles out of their way for you."

Someone else asked Mrs. McCrary about her best advice for bringing up kids, based on her own experiences. This is her moving answer:

On the flight headed home, Sabrina kept talking about the trip (she still is). Then she grabbed my hands, looked at them and said, "Mommy, you have germs on your hands." Charming. But at least I had a whole bunch of tissues in my purse.

Now, a giveaway: Kleenex is offering up a one-month supply of tissues. To enter, just leave a comment below with any questions you have for Mrs. McCrary about getting children ready for school (she has experience with kids who have special needs, FYI). Or share your own tips about easing kids into school; a bunch of the best will be chosen to run on Kleenex's site. This giveaway is open to residents of the U.S. and Canada and especially moms who don't carry tissues in their purse; I'll pick a winner on Monday, July 26, announce it on this post, and alert you by e-mail.

Update: The winner is Nikki of Faithfully Frugal, who wisely puts her kids to sleep earlier a few weeks before school starts and also makes them get up earlier. I hope your family stays healthy and won't actually need the tissues anytime soon!

Friday, July 16, 2010

Kids With Special Needs Around The World: Sweden

This is the first in a series of posts I hope to do from moms of kids with special needs around the world (e-mail me if you live abroad and would like to be featured, or know of someone who would). Please give a warm welcome to Towe and Tekla! I can't think of a more inspirational way to kick off this series.

This is a post from Sweden. My name is Towe. I'm 25 years old and work as a freelance writer and columnist. I blog at Smulgubbe and I am working on a children's book where the heroine is in a wheelchair.

I'm also a mother of a little warrior princess with cerebral palsy. The beautiful one is named Tekla, which is a Greek name and means "Through God's good reputation" (something like that). She is really a caring little fighter who loves to meet new people. Mostly the small ones. She was born seven weeks early by emergency caesarean section because my placenta broke prematurely. I was home alone when the major bleeding occurred and had to call the ambulance myself. Just 47 minutes after my call, she was born. When she was delivered she was not breathing by herself and was completely blue. The heartbeat, just a few irregular heartbeats. And a bit later, her lung collapsed....

She was on her way to dying. It was very close, but thanks to several talented pediatricians and surgeons she survived. Thank God. She laid in the incubator for a month and then she was actually declared healthy. It was eight months later that we began to suspect that the oxygen deficiency had done damage to her brain. She never kept up with their other children and both her motor activity differed significantly. Otherwise she was healthy and happy baby enjoying life, and rocking our world :)

Today Tekla is 3.5 years old and she is a bucket full of sunshine. She's still acting like a rock star, and I'm her biggest groupie. She just had an operation to get a peg in her stomach because she is not getting sufficient nutrition. She can eat by mouth but can't eat sufficient quantities required. The operation went very well, and as with most things in Sweden it cost us nothing. Indirectly, I have paid for it because I pay taxes. In Sweden, most of the health care is for free because we pay high taxes. Children who have some form of disability get habilitation. Rehab? Don´t know the right word. It gives you access to physiotherapy, aids, medical assistance and other necessary support. They also help to coordinate botox and orthopedic surgery. Etc.

Generally in Sweden, support for children with disabilities is very good, although attitudes differ from municipality to municipality. But because of our tax system any help will be free and it works. Sometimes you have to raise your voice, it depends on where you live. In my family we have been lucky with the authorities. She attends regular kindergarten with an assistant who takes care of her, a little extra and it works out great. The first thing she says when she wakes up...well ok she don't speak but I ask her., "Hi starshine, you wan't to go to your friends?" And she nods very expectantly. Then we ride the wheelchair like its a Harley.

Other things that we get helped with:

- Horseback riding and hot baths are examples of physical therapy offered for children with both physical and mental disabilities.
- Financial assistance for the purchase of a car. Adaptation is done free.
- Renovation or expansion and adaptation of housing.
- People with certain disabilities are entitled to financial assistance. As a parent you can work yourself as an assistant for your child, or hire someone else. One can also apply for temporary housing with another family. We have that for Tekla and she lives two weekends a month with my parents as relievesr. You can also apply for respite at home. That someone comes to us a few hours a week and helps.

Being a special mother of a soldier like Tekla is really a privilege. I love the life that went so differently, and initially upside down. She has taught us so much about life—about gratitude and humility. That miracles exist and that nothing is impossible. That joy can take you around the world! And I'm so proud to be her mother.

Thursday, July 15, 2010

Preemies, cerebral palsy, autism, Down syndrome, ADD, PDD: We can all relate

Tonight NICU, a 10-episode docu-drama, will debut on Discovery Health at 10 p.m. (ET and PT time). The program takes you behind the scenes of the top neonatal intensive care units in Baltimore, San Diego and Cleveland. I'm going on a quick trip with Sabrina to Kentucky (more on that next week), but I'll be DVR-ing the two episodes airing. And you can pretty much bet I will cry my way through them.

I've always been a person who sobs at sad movies and TV shows. After I had Max, though, I had deep and extreme empathy for preemies and their parents. Max wasn't one—his cerebral palsy stems from a stroke at birth—but I know what it is like to go through extreme trauma with a newborn.

I feel a similar connection with all parents of kids with special needs, any kind of special needs whatsoever. Because even if the symptoms we are dealing with are different, there are some very common things we face as parents of kids with special needs.

* We know what it's like to have that throbbing worry in our heads and dull aches in our hearts about our children.

* We know what it's like to have to get past the grief—and, yes, the disappointment—that our kids aren't quite the kids we imagined, and learn that our kids are awesome in their own right.

* We know what it's like to have to juggle the doctors, specialists, therapists and medications on top of all the other stuff we do—and become medical experts ourselves. (And insurance-company warriors.)

* We know how awful some doctors can make us feel.

* We know how suck-y school progress reports can make us feel, too.

* We know how much it can hurt to see considerably younger children doing things our kids can't do...yet.

* We know what it's like to experience pity, pity we don't want.

* We know what it's like to run low on patience, and then feel guilty about that.

* We know what it's like to feel very alone, despite our family and friends.

* We know what it's like to still wonder why this happened.

And yet...

* We know what it's like to experience the super-thrill of a child doing something for the first time.

* We know how satisfying it is see a child exceed a doctor's expectations.

* We know what it's like to feel deliriously happy when our kids are happy.

* We know that their smiles can heal.

* We know what it's like to no longer think of a child as having special needs but to just think of him as a child, even if others think we are in denial.

* We know what it's like to be willing to do whatever it takes to get a child the treatment, services and care he needs.

* We know what it's like to love a child with special needs with a special kind of love, one that's both tender yet fiercely protective.

What other connections do you feel you have with parents of kids who have special needs?


Tuesday, July 13, 2010

Kid Goodie Giveaway: Win a $100 toy and game shopping spree!

As you may know from that to-do list for parents of kids with special needs I did, I have a thing against toy companies that rip off parents of kids with special needs. Fun and Function, which designs special needs toys, autism toys and therapy products, is most definitely NOT one of those companies. Most of their stuff is reasonably priced, creative, and just plain smart.

The site recently sent us the Mad Magnet-Match Combo Pack to check out. Developed by a speech-language pathologist, it comes with three games (Opposites, Part-to-Whole and Associations) that have magnetic tiles with images and words on them. You basically have to correctly pair the tiles with each other. For example, in the Opposites game, you place eight tiles on the board that have words like day, clean, happy, and then the player has to find the opposite tiles to go with them (night, dirty, sad). All the games also have suggestions for variations; for example, you can set up three tiles with only one correct opposite pair; the child has to identify the tile that doesn't belong.

These games are cool for encouraging Max to make both concrete and conceptual connections. I also get him to try to say the names of the images, which helps him practice vocabulary and articulation, and I spell out the words. These games are basically one of the ONLY games I can get the kids to sit down and play together, unless you count the Let's Try To Pull Out Each Other's Hair Game!, which I do not recommend. The site also has the By Kids Only line that features soft, tagless clothes for kids with sensory issues. Kids can even make their own design.

Fun and Function is offering up a $100 shopping spree to one of you, plus free shipping. To enter, just check out the site and leave a comment below about what thing (or things!) you'd most love to get for your kid. I've got my eye on their plastic scooter board.

Note, you must leave your e-mail if yours isn't on your blog as my ESP is still on the blink.

BONUS entries: After you leave your main comment, you can leave a separate one for each of the following that you have done:
Follow LoveThatMax on Twitter.
Tweet about this giveaway and leave a comment with your tweet time stamp (translation for Twitter newbies: click on the time below the Tweet, which shows you the URL). Try this tweet: Win a $100 toy shopping spree from @FunandFunction & @LoveThatMax, ends 7/21,, #SpecialNeeds #Giveaway
Subscribe to the To The Max feed; you can do that here, or another way, and leave a comment saying how you subscribed.
Follow this blog on Blogger.
Join the To The Max fan page on Facebook.
Add my button to your blog and post a link to your blog in the comment below.
Mentionthe giveaway on your blog or website, and link back to here. Leave a comment below with the URL to the post.
Come to our house and tell the kids to stop fighting over Max's iPad. Kid-ding!

This giveaway is open until Wednesday, July 21, 11:59 EST, and is for United States and Canadian residents. I'll announce the winner on this blog the next day and alert you by e-mail. Good luck!

And the winner is... ANewKindOfPerfect. Congratulations! I hope you and Peanut have fun shopping for stuff.

Monday, July 12, 2010

I'm seeing dead birds

I wouldn't recommend reading this over breakfast, as it is about dead birds and clueless people at town hall.

When we came home from our vacation two Fridays ago, we found a dead bird under the front bumper of the car in our driveway. Dave disposed of it (he comes in handy that way). Jill over at Scary Mommy accidentally let a few baby birds into her kitchen last week, and I was like, wow, that's crazy, but it's better than having a dead bird welcome you home from vacay.

Last Friday, Sabrina was playing outside and came running in. "There's a deaded bird!" she announced. "And bugs are eating him!" Sure enough, there was a dead baby bird on our front walkway. It looked like the one above only...deaded.

I am not typically the type to freak out about West Nile Virus (transmitted by mosquitos, carried by birds), but two dead birds in two weeks is weird; we've lived here for eight years without a single bird tragedy. I asked Dave to store the bird in something so we could get it to the health department, why he chose my best Tupperware container I can't be sure. He put it in the wood bin where we keep recyclables.

This morning, I went outside before work to take some pictures of these irises because flowers I grow never look this good, typically because they get run over by the kids. As I headed back in, I spotted a little bird sitting on our walkway. My heart sank. "Please don't be dead, please don't be dead," I muttered as I walked around him.

He looked like the other baby bird, and he was in the exact same spot. Could they be related? I thought. Is he paying a condolence call? Was I having a Sixth Sense moment and seeing dead birds? But, no, the little guy was alive. He blinked at me, then stood up and waddled off into the bushes. Clearly, he was ailing. I did the mature thing and ran inside.

As I walked to work, I put in a call to town hall. First I left a message for the guy who runs the health department, then I got some woman from pest control on the line. I told her what was going on.

"We test the water in the city for the presence of West Nile Virus," she said.

"That's great!" I said. "But I have had two dead birds on my property in two weeks, and one about to kick the bucket. I think something may be up."

"Well, we've tested the water for West Nile," she repeated.

"OK! But I think the health department might want to test the bird we saved."

"You have to get it to them within 12 hours or they can't test it," she told me.


"OK, then, we can't test the dead bird. But don't you think someone might just want to come check our property and see what's going on and maybe check in on the sick bird?"

"We've tested the water for West Nile," she said, and by then I'd realized I might as well have gotten a pre-recorded message.

Later, I sent an email to the mayor. The head nurse for the health department called soon after. The Board of Health official I left a message for is on vacation for two weeks. "But we've tested the water for West Nile and you'll be happy to know it's negative!" she chirped.

By this point, I was getting a wee bit wrought. "WE'VE HAD DEAD BIRDS!!!" I said. She agreed to consult with the "supervising" health official and get back to me tomorrow. How much would you like to bet they are going to tell me they have tested the water? On the Center for Disease Control's West Nile Virus page, "Fight the Bite!", there is some good, helpful information on battling mosquitos, but there is not a single tip on how to deal with town hall people.

I got home from work and did that one eye open/one eye closed/please don't let me see anything awful thing as I walked into the house. It did the trick because I didn't spot any dead birds, although I did nearly kill myself by tripping up the stairs. I shoved the poor Tupperwared bird into two garbage bags and begged Dave to get rid of it (I think he may have a future in that). Then I sprayed the entire wood bin with Method Pink Grapefruit Cleaner, because that's pretty much the answer to everything. While I did that, I got a bunch of mosquito bites, thereby ensuring my candidacy for West Nile Virus.

As I headed back inside, I noticed these huge black carpenter ants scurrying around our back porch.

And that's when I wondered why we ever decided to move out of the city.

On to the next obsession: car washes!

So, Max is no longer saying "ur-ul" (purple) every other minute; he is now saying "ARRRR WAHH!" every other minute. As in, car wash. Though purple is still his favorite color. I have to say, that obsession was a lot cheaper. At least we've made friends with the local car wash guy. Every weekend, we pay to go through it once, and then we get to go through again for free. Max helps dry the car afterward with the guys who work there, though I don't tip him.

I think in my next life I would like to own a car wash, because they seem to make a tidy little sum there.

Max's speech therapist Jeri (who's known him since he was two) had the brilliant idea of cutting up construction paper to look like a car wash, and that's what Max most loves to do lately—pretend he is pushing a car through the paper car wash. I like the occupational therapy benefit of how he has to grasp the paper and move it back and forth, good use of those hand and arm muscles.

Max is also happy to sit around watching YouTube videos of cars going through washes. This weekend, we visited the Apple store; I played them for him on a giant computer screen and he was ecstatic. Then we went to a BBQ on Sunday and there was a big lawn sprinkler. Max kept running through it, pretending he was in a car wash.

This obsession could turn out nicely for us. I gave Max a sponge and Sabrina manned the hose, and the kids washed the minivan a couple of times this weekend. (I do not think that is a child labor problem because we let them have ice-cream and juice breaks while they were doing it, so working conditions are pretty good and all.)

It would be kind of awesome if Max's next obsession involved learning how to make homemade bread and/or doing laundry.

And what is your child obsessed with lately?

Saturday, July 10, 2010

Recharge me, please

Cameras operate on batteries. Lots of toys operate on batteries. Parents operate on batteries...or so it seems. We just keep powering along all day, every day, 365 days a year. But when you're the parent of a kid with special needs, you get the extra-durable kind of batteries inside you. Because there is so much more we have to do for our kids.

I've got batteries on the brain because the Energizer people have partnered with An Island Life and Barefoot Mommies to offer a $2000 sponsorship to BlogHer; you're supposed to explain why you'd be a good Energizer Smart ChargHER. Let me just say, I think I have enough energy to fuel a small country, like other parents of kids with special needs. I'd happily putter around BlogHer powered by Energizer.

Sometimes, I compare myself to other moms I know who work and have kids. I see how busy, busy, busy they are—juggling their kids, their husbands, their jobs, their homes and their own well-being. I do all that, too (except I'm not so good at the taking-care-of-me part). And then I have the therapists to work with, the specialists, the doctors, the special equipment, the special needs. Last night, I spent close to an hour online looking around for an adaptive angled spoon that would be easy for my little boy to hold and scoop food with (the cerebral palsy affects his hand control). A seemingly small thing, but so significant to helping Max achieve independence with eating.

On most days, I am fully juiced up. Max gives me energy: Because he's such a sunny, determined kid and because whenever he accomplishes something, I get a charge. Today, we stood in our backyard and counted the big trees. Max counted up to five, the first time I've heard him do that. I was ecstatic. I did a happy dance.

On days when my batteries drain—either because I'm wiped out or because I'm feeling a little discouraged about Max's progress or my own abilities as a parent—I need to recharge asap. I have to be on for Max. Iced coffee helps. Calling a friend I haven't spoken with in a while does, too. Or I'll hop in the car and cruise around for a half hour, jazz music on. Presto! Batteries recharged.

What recharges you on days when you're drained?

Friday, July 9, 2010

Surf's up


"YAY! YOU DID IT!!!!!"


These are things I say to Max day in and day out. Anytime he achieves something, whether it's climbing up stairs with minimal assistance, successfully grasping a crayon and coloring (no mean feat for him), or spelling his name out loud, I am thrilled—and I want Max to know it. I want him to take pride in his accomplishments, all of 'em. I want him to feel inspired to do more, more, more.

Every so often, though, I get bummed about what Max can't do. Like the morning last week when the kids were at camp, and Dave and I took a long walk on the boardwalk. We got to the end, where some kids were surfing. They must have been about 10, three years older than Max. We stood there and watched.

Suddenly, I got choked up by the thought that Max would never be one of those boys surfing out there, so carefree. I mean, I am sure there is adaptive surfing. But he is not ever going to be a kid who can just pick up a board, run into the waves, jump on and surf. I am not being pessimistic here. That is the reality; Max lacks the upper-body strength and muscle control to do that sort of thing.

"Max will never be able to do that," I said to Dave, speaking behind the safety of my sunglasses.

Dave kept his eyes on the surfer boys. "Max will enjoy what he can do," he said, simply.

And just like that, the sad spell was broken.

Thursday, July 8, 2010

Wouldn't it be nice if everyone could enjoy life this much?

We recently got the kids new swings. Sabrina's came from Toys 'R Us, it's the Little Tikes Cozy Swing and costs $24.99. We needed to get an adaptive one for Max that offers him more support and let me just say, some of those adaptive swings are INSANELY priced. We're talking $600 bucks insane. We found this one for the relative bargain price of $109.95 from Achievement Products.

This is the sound Max makes when he is bubbling over with bliss. To me, it is the best sound ever. (Second best sound: Mendelssohn's Violin Concerto in E Minor.)

Of special note: See how nice and clean the ground to the left of Sabrina, inside the playset, looks? That is because it's where the poison ivy was, the one I valiantly blockheadedly cleaned out in short sleeves. I just had to point out the scene of the crime. I still have phantom itching.

BTW, thanks to you guys (and my relatives, I am sure), I am one of five finalists for Best Parenting Blog on Parents Connect! I'm proud, but especially proud to have been the only blog out of the 50 nominated about kids with special needs. I wish there were more of us in the mix, but I am glad I am there to represent us all. The voting is open until Sept 1, and you can do it daily. Feel free!

Wednesday, July 7, 2010

The kindness of strangers to kids with special needs

Seven years into having a child with special needs, I am still amazed by the kindness of strangers—those little courtesies and sweet gestures people extend to Max when they realize he is disabled.

It took time for me to reach a point of gratitude. Back in the early years with Max, I'd get unnerved when people did nice things for us. This mostly had to do with the fact that I hadn't yet accepted that I had a kid with challenges, and so it was always a shock to the system when other people noticed:

Oh. I have a child who looks like he needs help.

Oh. I have a child who really does need help.

Oh. I am a mom of a kid with special needs. How did this happen?

But all last week, during our vacation at the beach, I was deeply grateful for the kindness of strangers.

Grateful to the head of the day camp who took extra-special care of Max.

Grateful to the woman on the boardwalk operating the car ride who let Max go around again and again (and again and again).

Grateful to the woman at the zoo operating the popular kiddie train ride who let Max go around twice.

Grateful to the woman at Six Flags Great Adventure who was manning a bus ride. Max was too afraid to get on it; all he wanted to do was help open and shut the doors after people had gotten inside. And she let him, thanking him profusely for helping.

Grateful to the waitress at the restaurant who pureed meatballs for Max and then twice took back his milkshake to thicken it up so he'd have an easier time drinking it.

Grateful to the woman at the miniature golf course who let Max play for free.

Grateful to the maintenance guy at the resort where we were staying who was walking through the lobby carrying a box of pizza; Max ran up to him and gestured at the box. And damn if the guy didn't open it up and hand Max a slice on a plate (and then Sabrina, too, after she charmingly wailed "I WAAAAAAAANT SOME!!!!").

Grateful to the security guy at the resort who let Dave drive Max around in his golf cart in the underground garage (I think Max is experiencing severe ride withdrawal this week).

Sometimes, these gestures give me pause. I don't want Max to feel spoiled or entitled, and I don't want other kids to resent him. There was another little boy riding that train at the zoo who wanted to stay on it as well, only his mother made him get off. He glared at Max, though Max didn't notice.

Still, at this point in Max's life, I am OK with letting him get the kid-glove treatment (within reason). These gestures make Max happier. They improve the quality of his life and make mine easier as well. They also make me feel supported in this tremendous responsibility I have of raising a child with special needs. Whereas before the recognition from strangers was bittersweet, I have grown to appreciate it. I feel less alone.

It doesn't take a village to raise a child with special needs—it takes a world.

Tuesday, July 6, 2010

Independence Week

Well, it's back to reality today. Yipppeeeeeee. I don't think it's exaggerating to say the kids had the time of their lives on our beach vacation last week. We were at a resort on the Jersey shore, and we spent a lot of time hanging in the pools.

During our week off, I wanted the kids to really enjoy themselves, I wanted to relax, but more than anything, I wanted to work on something very important: encourage Max to do more stuff on his own. He's pretty codependent on us, more than he needs to be.

We got him a cute fish tube and he did a nice job kicking around in it. But this pool, with its mini geysers, was where he felt most comfortable. He's been obsessed with car washes lately, and he liked to pretend he was running his truck through the car wash.

On Tuesday, we visited Six Flags Great Adventure. Max climbed the stairs to this slide by himself (with Dave behind him just in case), then he went down alone. Score!

There was a fun little water area, where Max freely splashed around (geysers again!)...

...and a Wiggles section, too. We were over them as of a few years ago, but Max was still intrigued. At first, he refused to go on this ride. So Dave picked him up and plopped him into a car, anyway. And then, of course, Max wouldn't get off. He stayed on for seven rounds.

Sabrina enjoyed the ride too.

Max and Captain Feathersword. I think Max would make a fine pirate.

Hanging with Bugs and Daffy.

Both kids ate their body weight in ice-cream and shakes this week. Max fed himself on occasion, but likes it best when Dave feeds him.

One afternoon, Max and I went to the zoo together. There was a cute little train, and I bought us tickets for it. Only Max wailed when the time came to get on, so I returned them. He kept hovering around the train. I knew he wanted to ride it, but he had to push past his qualms. So I picked him up and carried him on. The whimpering instantly stopped. And when it was over, he asked to go on it again. See a pattern here?

Max especially loved miniature golf. He kept wanting Dave to help him swing, and Dave did, but we also made him try it himself.


Driving home, Dave and the kids sat in the back seat and pretended I was their chauffeur. "Driver, take me to DisneyWorld!" said Sabrina. "Driver, I'd like a beer!" said Dave. "ARRRR WAHH!" said Max ("CAR WASH!")

It was an excellent week. Max made some progress in terms of independence, but it's a long haul. For years, we have been doing, doing and doing yet more for him, and he's used to that. It's a fine line we walk as parents of kids with special needs, isn't it? Our kids depend on us for so many things. Yet if we don't push them, they won't achieve whatever independence they are capable of (Amalia over at Autisable just did an inspiring post on this).

Max is actually a lot more independent at school and with our babysitter than he is with us. At school, he'll use the potty. At home, he's been refusing (OMG, I have total potty despair). At home, he always walks down the stairs from our second to first floor with our babysitter, holding her hand and the rail. When he's with me, half the time he wants me to carry him.

How are your kids doing with the independence thing?

Sunday, July 4, 2010

May the Fourth be with you...and, vote?

We're back from a glorious week at the Jersey shore, I have a gazillion photos to download. Thanks again to Sarah and Janis for guest-posting while I was gone. And, yes, you saw it here first, the kids got to meet Bugs and Daffy. More on that later.

Dave and Sabrina just went off to do a local bike race, and this afternoon we're having friends over for a BBQ. While we were on vacation, Max become the new World Hot Dog Eating Champion. The kid can down three at once. We'll see if he can top his record today.

While I was gone, I got nominated for a 2010 BlogLuxe award! The voting's quick, if you're game, just click the button at right.

What are you doing today?

Friday, July 2, 2010

A totally fun time suck for the long weekend

My college roomie, Janette, recently e-mailed me this. I never answer chain emails, but this one was interesting to fill out and share with friends. Copy it, plop into an email and enjoy! Happy Fourth of July, all.

Welcome to the new 2010 edition of getting to know your family and friends. Here is what you are supposed to do, and try not to be lame and spoil the fun. Change all the answers so that they apply to you. Then send this to a bunch of people you know, INCLUDING the person who sent it to you. Some of you may get this several times; that means you have lots of friends. The easiest way to do it is to hit 'forward' so you can change the answers or copy and paste. Have fun and be truthful!

1. What is your occupation?
2. What color are your socks right now?
3. What are you listening to right now?
4. What was the last thing you ate?
5. Can you drive a stick shift?
6. Last person you spoke with on the phone
7. Do you like the person who sent this to you?
8. How old are you today?
9. What is your favorite sport to watch on TV?
10. What is your favorite drink?
11. Have you ever dyed your hair?
12. Favorite food?
13. What is the last movie you watched?
14. Favorite holiday of the year
15. How do you vent anger?
16. What was your favorite toy as a child?
17. What is your favorite season?
18. Cherries or blueberries?
19. Do you want your friends to e-mail you back?
20. Who is the most likely to respond?
21. Who is least likely to respond?
22. Living situation?
23. At the beach this weekend when I saw how amazing it looked after a long winter.
24. What is on the floor of your closet right now?
25. Who is the friend you have had the longest that you are sending to?
26. What did you do last night?
Is it sad that I can't remember?!
27. What are you most afraid of?
28. Cheeseburger
29. Favorite dog breed?
30. Favorite day of the week?
31. How many states have you lived in?
32. Diamonds or pearls?
33. What is your favorite flower?

Photo/Rachael and Jess

Related Posts Plugin for WordPress, Blogger...