Friday, March 29, 2013

Special Needs Blogger Weekend Link-Up: Strut your stuff!


Welcome to another Special Needs Blogger Weekend Link-Up, that time of the week.

The idea

Share a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. 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: Roses Are Red, Violets Are Blue, I Only Love Cars 2

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, March 28, 2013

Reinventing happiness, once again


I knew what was going to happen before it did, and I had settled things in my mind. Monday and Tuesday were the Passover seders—big, elaborate, ritual-filled dinners. You and your family sit around the table, recount the story of the exodus from Egypt, make blessings, sing songs and stuff your face.

Max has yet to sit through a seder. And sure enough, a few minutes into the first one, he wanted to leave the table. Convincing him to stay would have resulted in a meltdown, disrupting the night. So I let him sit in the room next door with his iPad. I would have been fine if he wanted to sit with us with earphones on, but no go. I belatedly realized that I might have enticed him to stay longer if I'd made up some sort of Cars 2 Haggadah, but by that point I didn't have time between work and cooking.

I'd expected Max to leave. I'd replayed the scene in my head, so it wouldn't upset me. Sure enough that night was no different than the others, and as I sat around the table watching everyone singing songs, I felt sad. I wanted Max with us, too.

Of course, Max was perfectly content. This wasn't about him, really. It was about me and my holiday fantasies, which I have yet to let go of. I knew that. It didn't help.

Tuesday night, different bunch of family, same scene. We each picked up our haggadah, the book that guides the order of the meal and tells the Passover story. As Dave was giving Max some dinner, Max started pointing to the cover of the haggadah. I looked at mine. "Family Haggadah," it read.

Max was pointing to the word "family." Then he pointed to me, Dave, Sabrina, the others. And suddenly, I knew that he understood one of the most important things of all about the holiday, the one that especially matters to me: It's about celebrating as a family.

Max wandered off into the other room, and we started. As we sang the familiar songs and the sound of the Cars 2 soundtrack drifted in, I felt OK. Content, even.

Image/Nrbelex

Wednesday, March 27, 2013

Kids with special needs abandoned on school buses: Why is this happening?


I read the story the other day and felt sick to my stomach: An 11-year-old kid in New York with special needs en route to school never got to class. That's because his driver and aide forgot he was on the bus, parked it and left him in the cold. He was found two hours later. Earlier in the month, a similar incident occurred with a New Jersey 8-year-old boy with special needs, only he was trapped in the bus for five hours. Asked what he did, Anthony Suarez said, "I prayed... I talked to my heavenly father."

It seems like this country needs a new law: No child left behind in the bus.

I've been tracking this phenomenon for a couple of years now, and incidents remain rampant. Google "child with special needs left on bus" and you'll see what I mean. Drivers for a bus company in Cary, North Carolina were recently suspended for leaving two kids with special needs on the bus after finishing their routes. Earlier this year, a driver left a four-year-old in Oakland, Michigan on the bus one school day morning. The little boy proceeded to get off the bus and wander around the neighborhood. In December, a three-year-old with special needs in Riverview, Florida sat on a bus alone for the better part of the school day. The State Attorney charged the bus aide with child neglect.

Some of our children are unable to articulate words. Some can't move themselves. Many are completely dependent on drivers and aides. This is the most simple problem in the world to prevent: Do a head count on every bus run. Make sure all those children are off the bus. Bus companies need to hold employees accountable for the children they transport, and make them aware there are real consequences (and possible criminal charges) involved. I am not so sure this is happening.

Max has had the same driver for several years, and she is wonderful. That said, the bus company she works for is less so. We had one incident in which an aide on the bus was strapping Max in incorrectly and squishing his legs, so much so he was hobbling when he got off the bus. I wondered what sort of oversight existed to make sure aides were properly trained. Last week, Max's usual driver was out sick and it was snowy; the aide on the bus called 40 minutes after the usual time Max was due home. Why so late? Because she did not have parents' phone numbers; they were all on the cell phone of the driver who was off. Really.

I tell you all this not to scare the heck out of you or to encourage you to yank your kids off the school bus and drive them yourself. But you can look into the safety measures your bus company has in place. When I emailed our district coordinator about the above incident, I asked her to look into making sure the aide on Max's bus has a list of parents' phone numbers. And I also asked her to let me know what protocols the bus company has for checking that all kids are off the bus when they get to school. You never know.

Ask your school coordinator or whoever the right contact is about this stuff. Yes, it's one more thing to do. But this, you need to know.

Image: Flickr/KB35

Tuesday, March 26, 2013

The best therapy for special needs moms


I spend a fair amount of time connecting with other moms in cyberspace—here, on Facebook and Twitter, by email. I hardly ever meet up with special needs moms in real life, except for a once-a-month girls night out that I get to every so often. But I was reminded of how key it is at the Blissdom conference, which I went to last week in Dallas to be a parenting/special needs community leader.

Blissdom is generally known for having a welcoming vibe, excellent information, loads of inspiration and sparkles—lots of sparkles. Katy from Bird on the Street (that's her above) roomed with me for a couple of days; her son Charlie also has cerebral palsy. Katy awed me by the fact that: 1) she is every bit as sharp and sane as she was when I met her in person years ago, even though she now has four kids under 5 and 1/2, and 2) she gets plenty of sleep because she believes in naps and valerian root. We giggled, laughed, cackled and generally cracked up from early morning to late at night. So much so that once the people next door called Security on us. Oopsie.

At the conference, I met Jessica of Don't Mind The Mess, mom to a three-year-old with PDD-NOS, and Sarah of Our Sonshines, who recently found out that her child could be a good candidate for selective dorsal rhizotomy. Hours before, a Blissdom staffer told me that her son with CP had the same operation, and it was a success; he'd gone from not being to support himself on his inward-turning legs to walking with DAFOs. I told Sarah about that as the buzz of chatting women surrounded us, just two moms connecting over CP.

Then I had late-night coffee with jewelry designer/blogger Lisa Leonard. Her son David, who's 10, has cornelia de lange syndrome. We talked a lot about our boys—how funny they are, the challenges they face, the scary medical stuff. We told their birth stories. I teared up. It was intense and inspiring and I went back to the room and fell into the deepest sleep.

Blissdom was a reminder of the power of heart-to-hearts and real-life laughs and being able to drink your a.m. coffee without anyone demanding to watch Cars 2 or begging you to let her wear a dirty shirt in the laundry. It's a reminder that I need to get to Girls Night Out more often. As much of a lifeline as our online special needs community is, there's nothing like actual meet-ups with other moms who get your highest highs and lowest lows. (Shout out to Allie of No Time For Flash Cards, Elaine of The Miss Elaine-ous Life and Jennifer P. Williams, who are also full of awesome.) Thank you, ladies: I feel so revived. Although come to think of it I could use a nap; Katy, can you lend me one?

Photo/Elaine Alguire

Monday, March 25, 2013

30 things people don't get about kids and adults with cerebral palsy (but should)


What does it really mean to have cerebral palsy? Until I had a child with CP, I had no clue that it affects every person differently. As with any human, kids and adults with CP are as unique as their thumbprints.

In honor of National Cerebral Palsy Awareness Day (today!), I asked parents of kids with CP and adults who have it to share what they wish people knew about the condition. This is what they had to say.

One thing I really wish people got about cerebral palsy is...

"There are different types, and they don't all affect people the way you think they do (i.e., when I was a kid, I though CP was always spastic quad in a wheelchair)."—Janet C.

"My son's motor and speech impairments don't mean he 'can't'—he can get the same end result but in a different way."—Theresa S.

"Our kiddos aren't so fragile, don't be afraid to talk to them or treat them like a 'normal' healthy kid. They have more love and wisdom than you could ever imagine!"—Melly B.

"Just because I use a wheelchair doesn't mean I also have an intellectual disability. People look at me and assume I can't function at all, which isn't the case."—Jane H.

"It's OK to ask questions. Please, ask. Don't assume."—Megan C.

"It's not contagious!"—Adrianne B.

"Cerebral palsy is not a disease!"—Keri F.

"It is not a tragedy."—Jessica M.

"One thing I really wish doctors got about cerebral palsy is how capable these special kiddos really are! Do not tell me how my child may never walk or talk because I'm just going to prove you wrong."—Melly B.

"If you know one person with CP, you know one person with CP. It affects everyone differently."—Annette B

"CP presents differently in people who have it. 'Well, she doesn't LOOK like she has cerebral palsy!' should be struck out of everyone's vocabulary because CP doesn't have a specific look.... And contrary to TV commercials for lawyers, birth injuries aren't always someone's fault. So no, I am not suing the doctor who delivered her."—Theresia C.

"Although we may do things differently, we are human beings and should be treated as such!"—Tyler M.

"My daughter has CP, your son has a peanut allergy, his daughter wears glasses, and her son wets his bed. We all deal with challenges, yet we all love our children."—Malky H.

"Other kids can do the same activities with our kids, you just have to adapt them. They want to have friends, too."—Tammie M.P.

"I tell people my son is Superman, he just spells it different: cerebral palsy."—Jennifer L.

"We are more alike than different. We have feelings, hopes and goals. Assume we understand and respect us."—Veronica N.

"'Even though it prevents me from talking, it doesn't mean that I don't love to be talked to!' I know this is what my son would want to say."—Kim M.

"We don't need your apology and sympathy. We love our Matthew just the way he is. We will tell people when we get the infamous "awww" or 'I'm sorry' that Matt is exactly whom the Lord intended him to be. He is wonderfully and fearfully made, so look out!"—Jann F.

"If you know I have CP, you know but one of thousands of facts about me.... Although I have to plan around my CP every minute of the day, it does not consume my identity. I care about things outside of disability world. I'm planning to enter law school next year, and people always assume I'm going to work in disability rights. I get tired of the 'Actually, I'm interested in criminal defense' speech."—Danielle O.

"Just because my son can't walk, crawl or talk at the moment, he's not stupid! He understands you!"—Jenny V.

"It's part of who I am, not just a diagnosis. It wouldn't go away or go dormant when you want it to."—Meg M.

"One day she will not just 'snap' out of it or grow out of it. So stop asking me when or if she will walk!"—Trisha I.

"CP is not a choice. My child has a fortunately mild case, but it's real, and he's not pretending or being lazy about the challenges he faces for fine-motor conrolas well as things like running. He can't choose to be more graceful or coordinated, and he's doing the best he can."—Laura R.

"It's very hard because of many things. One, you can't control your muscles very well. Another is the drooling and trying to control that. Third is that fine-motor skills are a pain. iPad is a great tool to use with anybody who has CP. I know this because I have CP."—Jon S.

"Children with CP are made in God's image, and what makes society think God does not have CP? I'm the mother of a child with CP, and he has given me the opportunity to view the world in a whole new way."—Duana B.

"It's not just my legs. CP affects every part of my body and causes chronic fatigue and pain. Please be patient, for I have to spend my energy wisely."—Cara S.

"People with CP are actually way braver and way stronger than typical people because they live in bodies that are harder to manage."—Sarah G.

"My daughter is NOT defined by her body that doesn't move like her typically developing peers, but by her brilliant mind that communicates through her eyes and vocalizations."—Paige S.

"A little bit of effort from friends and strangers to include and treat our child with CP just as a regular kid goes a long way. As parents of kids with CP, we are hyperaware that seemingly minor gestures actually hold a great deal of meaning."—Jen S.

"CP is what he has, it's not who he is."—Tana S.

Friday, March 22, 2013

Special Needs Blogger Weekend Link-Up: Exciting!


Welcome to another Special Needs Blogger Weekend Link-Up, a very valuable time suck.

The idea

Share a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. 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 Think I'm Turning Japanese, I Really Think So

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, March 21, 2013

Group therapy: Share your tips for special needs feeding issues

"I have two little girls 3 1/2 and 21 months old, both were just diagnosed with a chromosome 4 abnormality," the email read. "They have speech delays, developmental delays, seizure disorders, intellectual delays and the list keeps going. What I am really am writing you about is feeding issues!!! My girls hate, hate, hate eating unless it is puree and easily swallowed. Boy, could I use some advice. My oldest has seen specialists, and it's still a struggle. At one point she was living on bottles of Carnation Instant Breakfast drink! I know I should really speak more with the specialists but I am sick of people who don't deal with this three times a day, seven days a week telling me 'Keep doing what you're doing.' I just need something that works."

My heart went out to this mom, because I knew how she felt. None of the NICU doctors warned us about feeding issues, and so when Max started solids at six months, I was surprised that so much dribbled out. And sad, too, because Max already had so many challenges to overcome.

Max had difficulties with tongue coordination and swallowing, along with jaw weakness, all of which would make speech difficult, too. Feeding him a jar of baby food could take a half hour: we'd spoon some in, spoon back in what came out, repeat, repeat, repeat. Bottles were a mess because retaining liquid was even harder; Max would sop through the burp cloths I'd tuck under his chin.

Max is still mostly eating mushy stuff, and I just had a conversation with his longtime speech therapist about feeding him strips of melted cheese sandwiches to help get him chewing more on his back molars. To strengthen his jaw, before mealtimes we're putting a Chewy Tube stick on the back of each molar and having him bite 10 times per side for a total of 40. I asked his teacher if the aides in his class could do this at lunchtime, and emailed a photo:


I emailed this mom back to recommend she try to find other feeding specialists (she lives around Harrisburg, PA, so if you happen to know of a good one in the area, please share). I also told her about how we thicken liquids for Max with substances like Hormel Thick & Easy. And I offered to share part of her email here, to get more suggestions. 

Every kid with feeding issues needs personalized help, of course, but if you have great strategies that have benefitted your child, please share (and nobody try these at home without consulting an expert). 


Wednesday, March 20, 2013

Your kid rocks (and there's a t-shirt to prove it)


A few weeks ago, I connected with Tiffany Porter, a mom of two boys; her youngest, Jack, has cerebral palsy. She and her husband, Andrew, are the founders of Common Threads; they live in Oklahoma. How Tiffany explains her company: "We are on a mission to educate, unify and foster acceptance for those with special needs...one t-shirt at a time." They donate 10 percent of profits to a worthy family, organization or ministry every month.

The Porters

When Tiffany asked if I'd do a giveaway, how could I say no? I mean, Max rocks. Your kid rocks. ALL our kids rock. And these t-shirts are cool—look close and you'll see a walker, wheelchair, glasses and motorized scooter embedded in every "O."


To be entered for a chance to win a t-shirt in your choice of size (kids XS, S, M and L) and color...
1) Leave a note in the comments section below about why your child rocks
2) Enter your name/email in the Google doc, so I can contact you if you win.

The shirts usually sell for $15, along with adult versions for $19 (and can be ordered by emailing sales@thecommonthreads.org). I'll pick the winners on Wednesday, March 27 via random.org, announce them here and email as well.

Update: The winners are Amy S. and Debbie S. And I am quite sure your kids will rock their shirts!

Tuesday, March 19, 2013

Breaking news: Special needs mom's head explodes!


Unsubstantiated reports are widely circulating that the head of a special needs mom has exploded.

At the scene of the incident, in a local Michaels store, bystanders were shocked to see an astounding amount of information shooting out of the head including contact info for dozens of doctors, therapists, sitters and the special needs school district coordinator; her child's weekly schedule of therapies; data from seven years' worth of IEPs; insurance policy numbers, the claim P.O. box address and all the bills she'd submitted but hadn't gotten reimbursed for; the longest to-do list in the history of mankind; an equally long list of stuff she never did get around to; assorted medical jargon; details about developmental milestones she read in those "What To Expect" books years ago before she forced herself to stop reading those books; names of various adaptive programs; special needs financial planning tasks she was in denial about; a list of exercises the therapists recommended she try with her child; a list of apps the therapists recommended she download; a list of products the therapists recommended she buy; a pervasive vague feeling she'd forgotten to fill out an important form; volumes of guilt; various memorized recipes from Lipton soup boxes; plus the phone number of her best friend from third grade.

"She was standing there in the aisle mumbling something about finding a chunky kind of crayon recommended by the occupational therapist when her head exploded," said a bystander. "Nobody could believe it but then we figured it was maybe some kind of store promotion."

The body continued to function, reaching for a cell phone to dial in a prescription refill. It then wandered off toward the modeling clay aisle.

Authorities are still investigating the matter.

Image: istock/Obaba

Monday, March 18, 2013

A different kind of special needs: Helping siblings of kids with special needs


"You care about Max more than you care about me!" has become one of Sabrina's favorite phrases. This is both because she wants attention, and she feels Max gets more of mine. Every single time she says that, I am reminded that she has special needs, too.

Sabrina knows I write this blog for other parents of kids with special needs, and she has her Love That Sabrina blog. We often go on Mommy and me outings, ditto for her and Dave. She's gone to a couple of Sibshops sessions, and I plan to send her to the next one in our area. I am very aware that siblings of kids with special needs can be sensitive to the attention their brothers and sisters get. A friend of mine who has a brother with autism once told me how resentful she was of all the attention he got growing up, and I've never forgotten it.

Max does need major attention—with bath time, bedtime, mealtime, climbing, going downstairs, handwriting, grasping objects and numerous other things requiring fine-motor skills. He usually feeds himself these days, a major accomplishment. But food sometimes still dribbles out, especially soup. He loves the stuff but it's the worst consistency for him. Anything too liquid-y is hard to retain. We sometimes add rice or small pieces of tofu, but he often likes it straight up.

Sabrina and I have talked about Max needing help with stuff. But she's 8.

And so we were at a sushi restaurant this weekend and Dave was spooning miso soup into Max's mouth and Sabrina started getting pouty. And so I said, half-jokingly, "Would you like a bib, too?"

And she said "Yes." So I put one of Max's Cars paper bibs on her.

Then I asked, "Do you want me to feed you some soup?"

And she said "Yes!" So I spoon-fed her soup as Dave spoon-fed Max soup.

She ate her sushi (Philadelphia Roll) by herself. But then she decided she wanted to be a "messy baby" when she had her mochi (a sticky-rice concoction with ice-cream inside).



When we were done eating, she walked over, sat on my lap and snuggled her head into my neck and we just sat that way for a while.

She fell asleep as we drove home. She still looks so baby-ish and delicious when she sleeps, and my heart went mushy.

I don't have all the answers. I can just keep talking to her, give her as much attention as possible and hope it sticks.

Friday, March 15, 2013

Special Needs Blogger Weekend Link-Up: Yipppeee!


Welcome to another Special Needs Blogger Weekend Link-Up, your post home away from home.

The idea

Share a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. 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'm Legally Changing My Name To Lightning McQueen

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, March 14, 2013

And now, a word from Max's sleep-deprived dad


Hi, everyone. This is Dave, doing a guest post. Ellen is actually typing for me and I am dictating to her, but I think it still counts, right? I am not as fast at typing. She is also better at writing, but I am better at cooking.*

* Clarification: He is better at finding good take-out places.

I wanted to explain some stuff about dads and sleep deprivation because I think moms get all the credit for that. Every day, at about 5 in the morning, Max wakes me up with a little whack on my head. He does not do this to Ellen, just to me.*

* This is because of Dave's long-standing reputation as a human marshmallow; Max knows he'd never get away with this with me.

If I ignore him, he pulls my hair. Then I get up because Ellen is still sound asleep,* not that I am bitter about her sound-sleeping abilities.

* I am usually faking it because I need more beauty sleep than Dave does. Also: Every night he conks out at around 10 while I am up till midnight doing house stuff, kid stuff or work. I think moms get none of the credit for that.

Then Max and I have a little routine. He takes me to his room and he points to his Cars 2 DVD player. He says "Mine!" so I know for sure that it is his and not, say, Sabrina's or the new pope's.

Then he asks me to make his bed* and to put his Cars 2 bed tent in the correct position.

* Up until this point, I had no idea Dave knew how to make a bed. This is interesting news.

Sometimes we give his Cars 2 armchair a shake just to hear Lightning McQueen's voice. I have spent a disproportionate amount of my salary on Cars 2 merchandise,* but I am not bitter about that either. 

* See: "human marshmallow" above.

Once the bed is in good shape, we go downstairs. Some days, Max likes us to make scrambled eggs together. I hide his powdered anti-seizure medicine in them. It's harder to hide the stuff in Rice Krispies. Then Max wants to either check out some YouTube videos on his iPad of Cars 2 clips or the Disney Cruise. Or he wants me to wrap a blanket around him and settle him in front of the TV to watch Disney Jr.

Meanwhile, I'm kind of awake at this point and too lazy to walk back upstairs, so I just lie on the couch, stare into space and wish I were in my bed.

Even though I am sleep deprived, it's all worth it. At least I don't look sleep-deprived, I don't think.*

* He doesn't. He is as handsome as the day I married him.

I welcome your sympathy for my sleep deprivation.*

Ellen is not going to be able to type anymore because I am about to doze off on the couch.**

* I suspect I am the far more sleep-deprived person of the two of us, not that I'm bitter about that.
** He passed out before I finished typing this.

Wednesday, March 13, 2013

A new app for teasing siblings


Well, OK, I guess the Facetouch app wasn't specifically created to tease siblings. But Sabrina's been putting it to good use on Max, as you can see.

She was cackling to herself throughout a recent car ride as she hunched over the iPad, and when she finished her masterpiece she showed it to Max and said, in that special sing-songy voice she saves for him, "Looooook, Max! It's yooooooou!"

Max cracked up.

Not to be outdone, Max got the app on his iPad and....


This is eminently more entertaining than when they pull each other's hair.

Tuesday, March 12, 2013

Getting past the guilt you caused your child's special needs: group therapy

If you've ever felt guilty for "causing" your child's special needs, you'll relate to a message I got on Facebook after I shared Louise Kinross' post about blaming mothers for birth defects.

A mom of identical twins got in touch; one of her boys has cerebral palsy, the other doesn't. "Even though I didn't do anything to 'cause' the injury to my son's brain, I can't help but feel like I did," she wrote (she gave me permission to share her noe). "The entire pregnancy was normal, but I went into early labor at 31 weeks and delivered the boys at 33 weeks. I thought were were in the clear when they were 4.7 and 5.3 lbs at birth. They were healthy and perfect and it just sucks thinking back to those days knowing what I know now. I sometimes catch myself giving friends, who are expecting for the first time, advice on pregnancy and childbirth... am I really in the position to give advice on how to have a healthy pregnancy and healthy kids? Obviously CP isn't a sickness and my son is a healthy boy, but I just can't shake the feeling that I would do things differently if I became pregnant again."

I completely related to what this mom said; when Max was a baby I had regular pangs of "What did I do?" even after I knew there wasn't any way I could have prevented Max's stroke. Unfortunately, rationale isn't always an option. Was it the day I almost slipped down the basement stairs and sat down hard on my butt? Was it drying paint I inhaled in our new house? Was it that yelling fight I had with Dave about who knows what during my third trimester?

From the start, what's most helped me wrestle guilt to the ground is taking action. When I do stuff to help Max, I feel more positive and in control—the very opposite of how I feel with self-blame. I went into action overdrive when Max was a baby, constantly Googling treatments and taking him to as many therapies as I could humanly get to. Finding information (at reputable sites!) and talking with doctors about strokes and cerebral palsy helped, too. The more you know, the more reassured you can feel that you did not cause your child's birth defect or disability.

Have you felt guilty about your child's disabilities? What's helped you get past it? Let the group therapy begin.

Monday, March 11, 2013

A day of freedom


This weekend, our family had a rare day of schedule freedom. So what did we do? Got the kids a gig selling pies.

Any parents have to get used to centering their lives around their kids, especially when they're toddlers. But when you have a kid who gets a lot of therapies, life gets more regimented. Mostly, I haven't minded—just the opposite. I've always wanted to get Max as much speech, occupational and physical therapy as possible. When he was a tot, we'd take him for craniosacral therapy and hyperbaric oxygen therapy, too.

Now, Max gets therapy once a day after school. On Saturday mornings, his longtime speech therapist comes over. Sunday mornings, he goes to a great program for kids with special needs. Sabrina has her activities, too—tennis, cooking class, dancing.

It's rare to have a day with no plans and when we do, it feels like a gift. Saturday was one of those days: Therapy and activities all got cancelled, for various reasons. We woke up when we wanted to, with nothing to rush for, which felt both weird and seriously wonderful. Sometimes, I feel like the weight of the world is on my shoulders as a parent, but days like these take the pressure off. I felt free—of appointments, structure, responsibilities.

We were just going to loll around the house, maybe go out for dinner, when Dave's dad called. Did we want to come over? He lives a couple hours away. Usually, decide on visits months in advance. But it was gloriously sunny for March, a great day for a road trip, so off we went.

Dave's dad and his girlfriend make and sell these decadent fruit pies—apple, lemon, plum, OMG—and they run a booth at a market on weekends that we hadn't yet seen. The kids had the time of their lives punching register buttons, sampling (and more sampling) and adding up sales. They even got a salary, a whole $2.

Sabrina was so enthralled she asked if she could quit school and help Grandpa Michael sell pies.




Max's favorite pretend play when he was a tot involved cooking in a play kitchen, so this was a fantasy come true. When I gave him a dollar, he put it in the cash register and told me to take a pie. 

Oh, and he remembered to give me a receipt, too.

We were so full of pie, pizza and pickles (all from booths at the market) that we didn't even have dinner. We drove home late, our bellies full, content about a day where no plans turned out to be the plans of all.

And now, of course, I want to plan for more no-plan days.

Friday, March 8, 2013

Special Needs Blogger Weekend Link-Up: We're gonna have a good time


Welcome to another Special Needs Blogger Weekend Link-Up. Abraham Link-oln would have loved this. OK, I am allowed one bad pun a year, and that was it.

The idea

Share a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. 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've Got Spring Fever

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, March 7, 2013

30 ways to respect kids and adults with disabilities


Yesterday was a day of awareness about respecting kids and adults with intellectual disability by not using a word that perpetuates crappy stereotypes. Today is a day of awareness, too. And so is tomorrow. And the day after. And the day after that. It's part of the gig of raising a kid with special needs: raising respect for them.

Asking people to use non-derogatory language is one way to promote respect; encouraging respectful behavior, attitudes and actions are others. So what does that mean, exactly? I threw out the question on Facebook and Twitter. Check out the responses that came in from parents of kids with special needs, people with disabilities and people who generally care—then add your own.

Respecting kids and adults with disabilities means...

"Seeing the disability as an integral part, but only one part, of a human being."

"Presuming that we understand."

"Finding common ground."

"Treating them the same as you would anyone else! I hate when people act like they're walking on eggshells around my daughter because of her disability. She's just like any other 2-year-old in most ways!"

"Realizing they have a voice, even if it's not a verbal voice."

"Realizing that even though they may not be able to communicate in a typical way they definitely still have a wide range of feelings and emotions and want to be heard and understood."

"Teaching your children that different is OK."

"Seeing strengths instead of just limitations."

"Speaking to them, not about them."

"Believing in their potential to learn."

"Not pitying them."

"Treating them as you would want to be treated."

"Respecting, not judging. We all have a voice. We are all differently ABLED."

"Not limiting them to a diagnosis—instead, giving them the tools and support to reach their highest potential."

"Asking questions—don't just stare! I may walk a little differently but I'm not an animal at the zoo! I'd be more than happy to tell ya a little more about CP."

"Caring enough to educate ourselves about what disabilities are."

"Not making any assumptions."

"Understanding that it is our differences that make us individuals and make life interesting!"

"Listening to them. Waiting and not finishing sentences for them."

"Not identifying anyone by their diagnosis—i.e., not saying 'a bipolar' or 'a schizophrenic' or 'a quadriplegic' etc."

"Fostering their independence as much as possible."

"Not taking up the handicap hashmark spot with your motorcycle!!! Drives me nuts! How the HECK am I suppose to get my son out of my vehicle without knocking your BIKE over???"

"Talking to them like they are important and their opinion matters."

"Seeing their humanity, not their disability, first."

 "Allowing your children to be curious and ask questions. Ignorance doesn't allow for acceptance."

"Patience. Have lots of patience. Especially when we check out at a store. Why is everyone in such a rush?" 

"Celebrating that we all have something special to offer this world."

"Equal opportunities, integration, communication, awareness, understanding and necessary supports."

"Accepting, not just tolerating."

"Teaching the next generation to respect kids and adults with disabilities, too."

Respecting kids and adults with disabilities also means... 

"More to their mommies than you'll ever know!" 

"More to the differently-abled population than anyone can imagine!"

"The world to those who love them."

Image: istock/Thinglass

Wednesday, March 6, 2013

Quiz: Do you get why this word hurts so much?


It started with an experiment where I tracked the word "retard" on Twitter and asked people to reconsider using it. And I've continued to speak out about the r-word and how offensive it is, as have many parents of kids with special needs and others. It's been gratifying to hear people say that they have quit using that word. It's been hard to hear people staunchly defending their use of it or getting into passionate diatribes about semantics and freedom of speech. Sometimes, it seems as if the word might be engraved on people's tombstones, so fond of it are they: Here lies Cassie, devoted mother, loving wife, advocate for the word "retard."

Today is the fifth annual day of awareness for Spread The Word To End The Word, a campaign created by the Special Olympics. To illuminate why the word is so demeaning, why parents take it so personally and why this isn't just about a word, I put together a little quiz I hope you'll share. The prize for acing it: a lifetime supply of compassion, consideration and soul.

1. The word "retard" is another word for...
a) Loser
b) Pathetic
c) Uncool
d) Stupid
e) Clueless
f) All of the above

2. The phrase "That's retarded!" basically means...
a) "That's uncool"
b) "That's ignorant"
c) "That's ridiculous"
d) "That's pointless"
e) All of the above

3. And now, a three-step exercise. First, read this paragraph:

When Ann Coulter referred to President Obama as "the retard" in a tweet last October, Special Olympics athlete/global messenger John Franklin Stephens wrote an open letter to her. In it he said, "I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means I'm dumb and shallow.... After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult...."

Then watch this video:


Then answer this question:

If people with intellectual disability are offended by the word and consider it a slur, it's better not to use the word, right?
a) I don't agree.
b) I think I'm starting to get it.

4. True or False:
• "Mental retardation" was once a clinical diagnosis. When the words "retard" and "retarded" became derogatory slang, however, modern-day organizations, doctors and schools quit using that diagnosis.
• In 2010, Congress dropped the terms "mental retardation" and "mentally retarded" in federal health, education and labor laws and replaced them with "intellectual disability"—and 43 states have passed similar legislation.
• I am a clever person who can come up with plenty of other words to use besides "retard" and "retarded" and "tard."

5. Logic section!

IF you had a child with intellectual disability, and you wanted to empower this child in a world where there is real stigma against people with disabilities, and you pray that he'll never feel like a lesser human being for having disabilities, MIGHT you want people to avoid using a word that perpetuates negative stereotypes?
a) Nope
b) I get it, I get it

6. If you're not yet convinced, consider this: You wouldn't make fun of someone who was deaf or paralyzed—or use their disabilities as insults, would you? As in, you'd never say "Oh, my boss is such a quadriplegic!" So then...
a) It makes sense not to slam people with intellectual disability by using "retard" as a synonym for "loser"
b) I'm still not convinced

7. OK, then try this fill-in-the-blank sentence where you replace "retard" with another word, and see how it feels:

"She is such a [insert your name/your partner's name/your child's name/your mother's name] for dropping her iPhone out the car window!"

8. If you still insist it's fine to use the word as long as you are not actually making fun of a person with intellectual disability, then you are:
a) Missing the point
b) Missing the point
c) Missing the point
d) All of the above

9. In the last couple of years, when celebs and other well-knowns have dropped the r-bomb, some have publicly apologized. Take Lady Gaga, who used the word "retarded" in an interview then issued a statement that said "I consider it part of my life's work and music to push the boundaries of love and acceptance. My apologies for not speaking thoughtfully...."

This is a sign that:
a) These celebs feel badly
b) Their publicists have told them to feel badly
c) The word is a slur, so publicists consider it important enough to issue statements
d) Lady Gaga should do a song about why the word sucks
e) All of the above

10. This whole thing about people speaking out about the r-word: Is it about censorship, political correct-ness or freedom of speech? Or is it really about consideration, dignity and respect for people with intellectual disability?

a) It's really about consideration, dignity and respect for people with disability.

ANSWER KEY

Do the decent thing and use a word that doesn't insult people with disability, demean them and pain those who love them.

Extra credit: Watch this video, take this pledge.

Tuesday, March 5, 2013

Max is a Fruit Ninja, and I am his Samurai Mom


Sunday afternoon, we were all chilling in the living room, glued to various screens. The kids were on playing games on the iPad and computer, Dave and I were in the HGTV zone.

Sabrina: "Hey! Max is better than me!"

I walk over to the couch to see what she was talking about. Max is playing Fruit Ninja; the goal is to use your finger to "slash" assorted flying pieces of fruit. Ordinarily, a game I'd consider pretty ridiculous except Max's agility with his finger is kind of amazing. He zooms all over the screen, slicing fruit left and right. Adeptly. Precisely. Quickly.

Whoa.

Max's destiny as a Fruit Ninja was not always clear cut. Back when he was a tot and he wanted to point at something, his brain just wasn't able to get the right message to his finger ("YO! BUDDY! POINT!"). Max's version of pointing was basically an angled fist.

Over the years, with lots of coaxing from occupational therapists and hand splints that helped isolate his thumb and index finger and eased the spasticity, the agility came along. One therapist took to using Coban wrap, winding it around the base of each finger to separate them. I played my part, too: the countless times I grabbed his chubby little finger and positioned it to point, all the "Max, point your finger, you can do it!" coaxing and cheering.

If you had told me before I had kids that the mere act of pointing a finger would prove to be a major feat, I wouldn't have understood. It's another one of those things you never think about until you have a kid with cerebral palsy, at which point you become hyper-aware of every muscle movement. Since I've become Max's mom there have been times when I've just sat at my desk, wiggled my fingers and marveled at how they move.

Pushing to get Max a speech communication device helped, too. At his old school, I had to beg for a Dynavox; the head of the speech department wasn't sure he was "ready" for it. I said, "How will you know if we don't try?" That was the tipping point when I realized I needed to get Max into a more progressive school.

He got a Dynavox, which helped not just with speech but with isolating that pointer finger. He can do it on both hands, but his left one is the more functional one of the two. He got even better at finger-pointing when the iPad and speech apps came along because he was so motivated to use them. These days he's typing letters and full sentences, and surfing YouTube on his own. And now, he's a veritable Fruit Ninja master!

The finger still isn't the strongest; when Max goes to press an elevator button, he has to do it several times. For his birthday, I got him a Lightning McQueen camera he wanted; he loves it but he can only pretend to press the "shutter" because it's too stiff. Sometimes, he'll give up on using the tip of his finger and just knuckles it. But what works, works (the running theme of my life as a special needs mom).

Sabrina definitely seems surprised by the fact that Max is a superior fruit warrior than she is. "You know how we talk about how everyone has their special talents and abilities?" I tell her. She nods. "Well, this is one of Max's talents! He's a Fruit Ninja!"

She laughs, I laugh, Max laughs.

Rock on, Fruit Ninja.

Monday, March 4, 2013

Dealing with wheelchair situations: advice from a roll model



This is a guest post by Stacy Mayfield, a 32-year-old preschool teacher who has cerebral palsy. I read a guest post she’d written for Offbeat Bride about her Dr. Seuss wedding, loved her spirit and sense of humor, and asked if she’d share some of that here. Stacy lives in Austin, Texas, with her husband, two bulldogs, two cats and forthcoming baby (due in April). As she describes herself, “I push the norm with every push of my wheelchair.”  

“Can you please keep an eye on the door while I help my daughter?” my mom pleaded with the stranger, transforming an innocent bathroom user into impromptu security guard. It was 1986 and we were in a Disney World restroom. The largest stall was only large enough for one adult, had no grab bars and required immense creativity. Mom left my wheelchair outside the stall and lifted my 6-year-old self onto the toilet.


This was before the American with Disabilities Act in 1990. Now there are buttons that open doors, grab bars and sometimes even more than one designated accessible stall (gasp!). Progress is evident; however, “accessible” to one person might not be to another. I’ve been in places where the doors wouldn’t close behind my compact manual wheelchair to afford privacy. Heaven help those with motorized models.

Thus, I offer my first morsel (nuggets seem too large…everything in moderation): Know what “accessible” means to you and your family before you go out. Do you need ramps in every situation, or can you/someone you trust safely jump a curb? Can your child walk at all if there are steps with railings? What is his/her physical limit? Once you have answers, you also have the ability to plan. You can call ahead and ask about certain wheelchair-friendly features and be more comfortable if you encounter unexpected inaccessibility.

Maybe I should say when you face inaccessibility. My favorite ribs place is a hole-in-the wall restaurant with a maximum capacity of 40 (including staff). I’m glad I bring my own wheelchair to save space, but I’m 8 months pregnant, so I guess everything cancels out. When I have my own child, they may have to sit on my lap.

I love this place…but I’m also very vocal about the difficulties I face, and I continually ask the owner about the progress of his building remodel. Which brings me to morsel number two: When you advocate for physical accessibility, it teaches your child to do the same. My mom would inform managers of inaccessibility issues, write letters to schools and tell me, “Baby girl, you’re worth every bit of effort. Don’t let anyone say you’re too much trouble. If everyone had to spend the day in a wheelchair, the world would be full of ramps.”


Amid her physical accessibility rant was perhaps the biggest piece of advice yet (a nugget, even): When you challenge the perception of “normal,” your child will, too. I remember being in a toy store when a young woman with a toddler asked my dad what was “wrong” with me.  He said, “Nothing. Well, she can be stubborn. What about your kid?”

As I grew older, I learned to answer the question earnestly, while still reframing the word “wrong.” If people asked my mom or dad the question when I was present, I’d say, “I can hear you just fine. There’s nothing ‘wrong’ with me, I just get around in a chair instead of walking because my brain makes my legs work differently than yours.”


When I became a preschool teacher in my twenties, I told my classroom the same thing and allowed as many disability-related questions as they could manage. I was comfortable in my own skin, self-confident and happy to create a new “normal” for the next generation.

I still am. As I embark on my first-time parent adventure, I am grateful for parents who made me feel like I could adapt to anything “out there” in the world…even motherhood.

Friday, March 1, 2013

Special Needs Blogger Weekend Link-Up: Post your posts!


Welcome to another Special Needs Blogger Weekend Link-Up, aka your reading material for the weekend.

The idea

Share a favorite post of the week—yours or someone else's.

What to do

Scroll all the way down to the bottom of this post. 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: Two Serial Casts Down, Ten More To Go

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!