Love That Max

A genius new auto-injector for allergic reactions and other revelations

noreply@blogger.com (Ellen) — Wed, 19 Jun 2013 10:40:00 +0000

If your Cars 2 obsessed child happens to leave his Cars 2 lunch box at the bowling alley where he attended a birthday party over the weekend, and you are not able to pick it up till the following weekend, he will somehow survive.

Somehow, I always forget that June is the most hectic month of the year, next to December. My brain just keeps thinking that it should be easy.

There's a new epinephrine injector, the Auvi-Q. It's a bit larger than a credit card and about 1/2 inch thick, so it's easy to tote around; it has voice instructions to guide you through the injection process; and it comes in kid and adult doses. Our pediatrician think it's going to put the Epi-pen out of business. I'm getting three of them, because I am extravagant that way! Er, I need one for home, one for school, one for the car/when we're out and about.

End-of-year teacher and aide gifts sometimes stump me, but this year I got them little wind chimes with a purple hanging pendant, so they'll also remember Max. [Pats self on back.]

I could easily spend the better part of my life browsing Houzz. At least I have plans for retirement.

That old saying "Always get it in writing" is excellent advice.

It's actually humanly possible to retain all of the pieces for a toy for 10 years. Is there an award for that?

If it weren't for Guerlain Meteorites luminizing powder, some days people might not be sure I am still alive.

If you are on the commuter train in the quiet car, where people aren't supposed to talk, and the guy sitting next to you is mumbling continuously as he works on his laptop and you say "Excuse me, this is the quiet car" and he says "But I'm talking to myself!" it's best to just move.

If your 8-year-old has been asking for a year to get her ears pierced and you finally give in, you will no longer have any good threats left to make her clean her room or otherwise behave. But she will look very cute.

If your child needs to bulk up, consider feeding him macaroni and cheese pie (what Max calls this recipe made from acorn squash). Max consumes vast quantities of it, and whereas at his annual checkup the doctor was concerned Max was maybe on the puny side, at a follow-up appointment four months later Max had gained TEN pounds and grew an inch and a half. Thank you, macaroni and cheese pie.

It is not a good idea to DVR the season's first episode of True Blood and watch it right before you go to sleep.

You're never too big of a kid to enjoy the rides at the mall.

How to (mostly) have patience when your child acts up

noreply@blogger.com (Ellen) — Tue, 18 Jun 2013 10:39:00 +0000

"In one post (I can't remember which) you mention having endless patience for your child. Really? I struggle with this so much," the email read. "My little girl is 3 1/2 and her more challenging behavior makes me want to scream with frustration. The refusal to eat by herself (even though she can), the fits of screaming in public places when we take her to something we had hoped she would like, the running away when we ask her to come, the constantly taking off her clothes (although I'm obviously proud of her new skill)... small things mostly but frustrating nonetheless. I end up feeling angry and resentful with her and wishing that life were easier, then guilty and wretched for not accepting her as she is. If I don't, who will? Endless patience? I wish! Do you have any advice?"

I instantly: 1) Knew how this mom felt; 2) Realized she must have mistaken my blog for one Mother Teresa used to write, or something like that. I most definitely do not have eternal patience, I told her, and have felt similarly distraught when Max has screechfests or refused to do stuff I know he can do.

If we're at home, my go-to solution is to put Max in a place where he can lose it safely, like his bedroom, and let him cry or shout it out for a few minutes. Bonus: This gives me time to regroup. If I run out of patience I often let Dave take over, especially if we're in a public situation; he is less emotional about dealing with meltdowns. If we're at a restaurant, for instance, he'll grab Max and head outside.

We've also learned that timing is everything. Max is most in danger of losing it when he's hungry, so we'll leave the house only when he's well fed—and give him a snack before we hit restaurants, so he's not starving. Headphones have helped with transitions. When Max screeches, I've been known to put them on myself. This has the effect of cracking Max up; distraction can work wonders, though it's not always possible.

Taking care of me helps, too. I try to grab time to relax every week, whether it's girls' night out or having an iced latte in a coffee shop and reading for a half hour. When I recharge, when I have treats to look forward to, I'm better equipped to handle whatever the kids throw my way. A time efficiency expert I once heard at a seminar recommended that on Sundays, you plan something fun for next weekend instead of leaving it to, say, Friday; it helps power you through the week.

Yes, sometimes I wish life were easier. But that comes with the gig of parenting a child with special needs, and it's nothing to feel guilty about. You'd be hard-pressed to find a parent who hasn't wished her child would behave differently—special needs or not.

What tactics help you deal when your child has a meltdown or acts out?

Toys aren't us: Dealing with special needs parent buying compulsion

noreply@blogger.com (Ellen) — Mon, 17 Jun 2013 10:40:00 +0000

I did a huge toy purge this weekend—perhaps you heard me screeching "I can't believe how much crap the kids have!!!" as I unearthed yet another game that was missing approximately 97 pieces.

It's been years since I sorted through the kids' games and toys, and there is a mind-boggling amount of them. This is mostly because of the buying sprees I went on during Max's early years, when I figured the more toys to simulate him, the better. I looked to toys for salvation, hoping they could spark his intellect, encourage him to better use his fingers and hands and even get him to walk.

Toys have most definitely been therapeutic for Max. The Mozart Magic Cube, with its different instruments and bright lights, encouraged Max to reach at a time when it was a real strain for him (cerebral palsy messes with your muscles that way). The Fisher Price Laugh & Learn Fun With Friends Musical Table encouraged him to pull to stand. When he started taking steps but needed support, we'd load up a toy shopping cart with cans to give it weight and he'd walk around the house with it, Dave and I joking that someday Max would make a great personal shopper.

Problem was, I couldn't stop buying toys. Whenever the therapists recommended a toy, I got it, hunting it down on eBay if it was discontinued. If Max's teachers said he took a particular interest in one at school, I got it. If we were at a store and Max took a liking to one, I got it. No occasion necessary; every day was a day worthy of more toys.

Playing with them and Max wasn't always fun; at times I'd be so anxious for Max to better engage. (Also: Floor time can get really boring. What an awful parent am I!) I'd put stuff in bins so it wouldn't distract Max, but then I'd forget about those toys, and the clutter built up, threatening to take over our kitchen—I'd already converted the dining room to a playroom.

In recent years, I've gotten better about not over-buying. Experience has taught me that more toys does not equal better kid. And buying educational toys that Max has no interest in does him no good, and wastes money. I still ask therapists for recommendations at birthdays and holidays, and we just have a leetle Cars 2 merchandise problem, but in general we no longer OD on toys. I just never dealt with the pile-up. Now that our basement's done we've socked away a bunch of toys there but still, our house felt like toys gone wild. And so, this weekend, Dave took the kids out and I mercilessly tossed stuff into big trash bags to donate.

I hesitated the most over Max's fleet of dump trucks and fire engines, because he still loves pushing them back and forth and back and forth, but I chose some favorites and out went the rest. I had no problem getting rid of the bazillion party-bag favors we'd accumulated; those plastic things oughta be illegal because the kids forget all about them the second they are home from the birthday party, they consume space and they are a waste of resources. If you happen to be interested in owning 42 hand-clapper things, though, contact me.

I felt good knowing the toys would go to deserving kids, yet sad because I had such a vested emotional connection to so many of them. The echoes of play and therapy sessions past filled the room as I sorted through everything. I could picture Max trying so hard to hold them and use the toys, and me, Dave, our babysitter and his therapists sitting on the rug, encouraging him.

"Push it, Max!"

"Touch it there, Max!"

"Use two hands to hold it, Max!"

I'm about three-quarters done and I've filled five huge bags to give away. Sabrina started looking through them last night, complaining that she still needed a bunch of stuff, exactly what she did the last time we had a garage sale. I suspect she may be destined for a starring role in Hoarders (like mother, like daughter) but meanwhile, I reassured her she still had a whole lot of playthings.

Happily, Max didn't seem to care. I carved out a cubby for him in the wood organizer completely filled with Cars 2 stuff, and he was ecstatic. Play is still plenty therapeutic for him these days; Lighting McQueen is excellent motivation to get him to talk and stretch his arms when he drives him around. Mostly, he just has fun with it—like any kid with any toy.

Special Needs Blogger Weekend Link-Up: It's addictive!

noreply@blogger.com (Ellen) — Fri, 14 Jun 2013 10:40:00 +0000

It's another Special Needs Blogger Weekend Link-Up, almost as addictive as chocolate, Chunky Monkey ice-cream and reality TV. Almost.

The idea

Link to 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 the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Can You Believe I'm Still Obsessed With Purple?

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!

Special needs dads are so hot when...

noreply@blogger.com (Ellen) — Thu, 13 Jun 2013 10:40:00 +0000

Dear Special Needs Dads,

It's not that your muscles aren't impressive or your hair's no longer gloriously thick or your smile any less dazzling than it was when we first met (they are, it is, always will be). It's just that we moms find some other stuff just as hot, sometimes even more so!

You're SO hot when you drive our kids to speech therapy, physical therapy, occupational therapy—really, any therapy.

You're SO hot when you patiently go over letters or numbers or spelling or math with them, again and again and again.

You're SO hot when you help them eat an ice-cream cone or enjoy a Slurpee because they can't yet do it on their own.

You're SO hot when you load photos onto the speech app or help program it.

You're SO hot when you load the dishwasher, too.

You're SO hot when you play T-ball, basketball or catch together, figuring out ways to make it work and make it fun.

You're even MORE hot when our kids finally grasp a ball or the concept behind a game and you get a huge look of pride on your face.

You're SO hot when you latch up their foot braces.

You're SO hot when you give them a bath.

You're SO hot when you massage their muscles so they're less stiff, do the ABA exercises, Google information on the Ketogenic diet and toss around sexy phrases like "I'll deal with the insurance company."

You're SO hot when you fall asleep next to them after you read them the bedtime story.

Did we mention you're SO hot when you load the dishwasher?

You're SO hot when you get all demanding at the IEP meeting.

You're SO hot when you remember to give the medication.

You're SO hot because you do things other dads don't have to without complaining, you don't get to cry to friends the way we moms can but still hold it all together, you (mostly) keep your cool when strangers are rude or places are unaccommodating, you cheer our kids on constantly and tirelessly even if you regularly fall asleep on the couch at 9:30 p.m. and snore as we're trying to watch HGTV but we're not complaining (mostly), you make our kids giggle like nobody else can with your Daddy jokes, you comfort all of us with your big Daddy hugs, and you do whatever possible to enable our kids, empower them and help them have the best life possible.

Love you.

More special needs mom fantasies: Stuff that would better my child's life (and mine!)

noreply@blogger.com (Ellen) — Wed, 12 Jun 2013 10:35:00 +0000

Aside from harboring fantasies about naps, winning a lottery so we could have a live-in therapist and George Clooney becoming a pediatric neurologist, I regularly dream of equipment in our home that would help Max. Sort of like if George Jetson had a kid with special needs. I'm talking about installing an escalator instead of stairs. A bathtub with mechanical arms to bathe Max. A robot who could dress him, help him drink from a cup at meals and, in her spare time, do all my housework and be my personal trainer.

Last night, I took Max to the pediatrician, which is pretty much the opposite of a fantasy. Not that I don't love this doc, because I do—he is down to earth, realistic yet encouraging and the type of guy you genuinely enjoy talking with. We were visiting because Dr. G had been concerned at Max's annual that he was on the short side. Wouldn't you know it, in the last few months the kid has grown a good inch and packed on 10 pounds (and for that, I have macaroni and cheese with ketchup to thank, although it sure doesn't look as good on me). I was so relieved.

On the way out, Max stopped at a low-lying water fountain. For a good five minutes he pressed the front panel on, slurped, pressed the panel again when he lost his grip, slurped some more, held the panel while I took a drink and, just for fun, pressed it on and off and on and off and....

This was awesome, because Max could drink away without water pouring all over him (as often happens) and because pressing that panel was good flexing of his fingers. And now, I'm fantasizing about having a drinking fountain in our house. Wonder if the insurance company would cover that? BWAHAHAHAHAHAH.

What's on your list of fantasy house stuff that could help your kids? Bet you've got some good ones.

Image: Flickr/ Hamed Saber

This Is How I Do It: Scott Price of Glad To Be Your Dad

noreply@blogger.com (Ellen) — Tue, 11 Jun 2013 10:40:00 +0000

This is the latest guest post in the This Is How I Do It series, which features bloggers who have kids with special needs and their go-to tips for parent sanity.

Blogger: Scott Price of Glad to be Your Dad

His kids: Anna, 15, legally blind since 4th grade due to an optic nerve glioma; Jay, 11, who has congenital bilateral sensorineural hearing loss and hears with a cochlear implant.

My three biggest secrets to sanity are…

• Faith that God, the Father, loves my children more than I can and despite what I feel about their disabilities, he knows what he’s doing.

• Periods of creativity, whether focusing on our family business (Sandlapper Soaps), writing for Glad To Be Your Dad or teaching and coaching.

• Piling up in the den with the whole family, watching a movie and eating popcorn—moments when all seems right with the world.

I keep track of my child’s therapy and medical appointments by…

My wife and I use Google Calendar to schedule appointments and activity pickups and drop-offs.

One way I relax (actually really, really relax) is…

Being near big water. I’m too active and pale-skinned to be a beach bum but plant me on a South Carolina tidal marsh with a crab net, a fishing pole, or a pad of paper and pen, and I can stay all day. Also, this will sound goofy but if I can spend a few days at a Disney property, I can relax. I really enjoy the execution of excellence and nobody does excellent customer service like Disney.

When I get bummed out about something related to my child, one thing that gives me a lift is…

Those moments when I can stop being the Character-Molder-in-Chief and just hug my babies. When Anna was diagnosed in with her tumor in the 4th grade, I noticed that I was one of the few fathers that showed up at the cancer clinic. I also noticed that I was one of the fewer still that would go into the back and hang with the kids, my Peeps during their treatments.

My company allowed me to alter my work schedule so I could accompany my daughter to the hospital each Thursday, Anna’s chemotherapy day. Thursday was brain tumor day at the clinic and through Anna’s 18 months of weekly treatment, I got to know a lot of kids and a lot of moms, but not too many dads.

I decided that I would be a dad-figure to any kid there that needed a dad hug. I stopped off each Thursday at a local candy shop and bought bulk candy for the kids in the clinic to wash the taste of the drugs out of their mouths. I became the losing-est checker player in the history of the Palmetto Heath Children’s Hospital, a title I hope to carry to my grave.

I lost too many of my Peeps to cancer and I recognize how very precious a gift I have been given in my own two children. So, in those times I can just love on them, I’m lifted.

If it weren’t for [fill in the blank], I am not sure I would be able to get through the day

You may have noticed that during this tale, I’ve spent much of my writing on Anna’s story, but it was Jay that set us on the path to advocacy.

He was born bilaterally deaf. We learned this the day after he was born. I wheeled him down the hallway from Robin’s recovery room to the newborn hearing testing room. At the time, I worked for a medical device manufacturer and designed cardiac monitoring devices. I got caught up in the science of testing a newborn’s hearing and barely processed the technician’s news that my son failed the test.

We came back to the hospital two weeks later and Jay failed the second screening. He was scheduled a couple of weeks later for a more thorough testing and like the first test, I became enthralled with the science of measuring the hearing ability of a newborn baby. Halfway through the third round of testing, I realized the audiologist was telling me that my son was deaf.

We got digital hearing aids on him at 9 months of age and he kept them until he was two and a half. His hearing continued to deteriorate until he became a candidate for a cochlear implant. I had real misgivings for a time about the technology, which was still new and untested in children. I feared him being shunned by the deaf community but, decided that he could make his own lifestyle choice at the age of majority and while he was in our care, I’d do what it took to give him as much of a mainstreamed life as possible.

Anna was our family champion. Robin and I took and picked up Jay from as many as eight hearing and speech therapy sessions a week during the height of his treatment. Anna read to him, got in his face, talked to him, and would not believe that Jay could not hear every word that she spoke. Every day. All the time.

Jay is now mainstreamed in school and is an A student, in large part due to Anna’s innocent intervention.

In April of 2008, Jay was named the South Carolina Speech, Language and Hearing Association’s Ambassador. Robin and I developed a presentation advocating for early intervention and cochlear implantation of children. We lobbied South Carolina’s General Assembly, we met the governor, and it is the month Anna was diagnosed with her brain tumor.

May not only became Better Hearing and Speech Month, it also became National Brain Tumor Awareness Month, and our story with Anna began.

Sometimes, I don’t know how I get through the day. Sometimes I want to wrestle with God, asking how he could allow this to happen to any child, much less either of my own. Dang, it’s hard. I just have to believe that his knowledge is greater than mine and though this is not the route I would have chosen, it’s the bus I’m on. And I’m going to make the best of it; where I am.

Maybe that seems fatalistic, maybe that seems I’m powerless, but believe me, if I could have flipped a switch for either of my kids, I’d have done so a long time ago.

The way my wife and I split up responsibilities for caring for our children is…

Like in most cases with special kids, the mom, Robin, my wife, is the primary nurturer and caregiver. We have been fortunate that our employers have been very flexible with our work schedules and that Robin has been able to work part-time. Now, it’s mostly splitting time transferring the kids between activities and appointments, IEPs and MRIs. As a friend once said to Robin, “You have a different normal than the rest of us.” So true. Anna is at the age where she qualifies for help from the SC Commission for the Blind, so we’re about to learn about a new new normal. Hopefully she will learn, we will learn the advocacy Jay had been taught.

The way I deal if strangers stare at my kid or say things is…

Education. I’m a teacher at heart. Jay plays travel baseball and wears a “baseball” haircut year-round, his behind-the-ear processor and loop are great conversation pieces. He wears a cochlear implant processor and a loop attached magnetically to his scalp; each device is very obvious unless he’s wearing his batting helmet. Most adults ask if it is the same device Rush Limbaugh uses to hear. I guess Rush is the most prominent celebrity who uses a cochlear implant, though my personal favorite is Heather Whitestone McCallum, Miss America 1995. We met her at a function and yes, forgive me, I’m just a man.

There was that one convenience store clerk who asked what cell phone company we used. I guess she liked Jay’s “Bluetooth headset." LOL.

Anna stubbornly refuses to admit she’s legally blind. She’ll tell her friends and teachers that she has vision problems but, she refuses to be classified as blind. It is with great difficulty that we can get her to use her white cane or sometimes, her magnification tools at school. As a fifteen-year-old high school freshman, she won’t willingly touch any assistive devices unless we force her to do so in crowded situations like Walt Disney World, a big city like New York or a crowd like a wedding reception. I don’t blame her; at fifteen, I couldn’t ask a girl out on a date without breaking into the hives. I can’t imagine being a fifteen-year-old girl, holding onto a white cane while waiting on Mr. Football to call.

One great therapy technique I recently learned for my kids is…

A-D-V-O-C-A-C-Y in all forms: self, parental and teacher.

One great site I’ve found lots of good ideas on is…

After searching the Interwebs about everything it said about bilateral sensorineural hearing loss, cochlear implant technology, optic nerve glioma and Pilocytic Astrocytomas, I decided to stop researching any term that had more than three syllables. Now, I look to inspirational sites and created one of my own.

I rock because…

I’m old enough to be my kids’ grandfather. So, I guess I rock because I’m the original Paleo? LOL. Really, I rock because I refuse to let my children be defined by their disabilities—or be limited by being their dad. I can, at the start and close of each day, tell my children, "I'm glad to be your dad."

Want to buy a monkey?

noreply@blogger.com (Ellen) — Mon, 10 Jun 2013 10:40:00 +0000

Max's speech app has been a game-changer for him and for me, too. When he says something and I'm not sure what it is, I ask him to show us on the Proloquo2Go. He either taps an icon or spells things out, and he's getting better at that. But sometimes, the iPad is downstairs and the two of us are upstairs or vice versa and Max is trying to articulate something and I have no clue what he's saying. This is how it usually goes:

"Max, can you say that again?"
"Max, can you say it again more clearly?"
"Sabrina, do you know what Max is saying?"
"Max, can you say it again?"
"Again?"
"Again?"
"Max, honey, I'm not understanding you, I'm sorry!"

It's always a fine line I walk, knowing when to keep prodding Max and when to quit. The entire time, I'm usually feeling badly because I can see how much he wants to articulate the words—and how much he wants me to understand them. It pains me that I cannot comprehend what he is trying so, so hard to tell me. I'm his mother. Shouldn't I be able to decipher? But, no. The sounds are too unintelligible.

Thing is, Max is generally an amazingly cheerful kid who's game to keep trying. And when he puts his mind to it he is, at times, able to enunciate words in a clearer way. So I am OK with pushing him—until he lets me know he's had it. And then, I'll grab the iPad.

The other week, Max said something at bedtime and Dave and I had no clue what it was. Dave said, "Max, you want to buy a monkey?!" because the words sort of sounded like that.

And we all burst out laughing.

Ever since, when Max says something we don't understand, first we say "Max, you want to buy a monkey?!" and everyone cracks up. Then Max tries again, smiling, as we coax him on.

You've just got to laugh.

Special Needs Blogger Weekend Link-Up: Welcome!

noreply@blogger.com (Ellen) — Fri, 07 Jun 2013 10:40:00 +0000

It's another Special Needs Blogger Weekend Link-Up, and now you'll have lots of reading material for the weekend.

The idea

Link to 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 the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Is It Summer Yet?

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!

See the child before the disability says UNICEF—amen!

noreply@blogger.com (Ellen) — Thu, 06 Jun 2013 10:39:00 +0000

Kids with disabilities and their communities would benefit if society focused on what these children can achieve, instead of what they can't, says UNICEF'S report The State of the World's Children 2013: Children with Disabilities. While this isn't a news flash if you are a parent of a kid with special needs, it is something many of us grapple with, day in and day out. As executive director Anthony Lake says, "When you see the disability before the child, it is not only wrong for the child, but it deprives society of all that child has to offer. Their loss is society's loss; their gain is society's gain."

The information on the welfare of kids with special needs around the world is shocking but, sadly, not surprising: "Children with disabilities are often regarded as inferior, and this exposes them to increased vulnerability," the report states. Children with disabilities are the least likely to receive health care or go to school, and are among the most vulnerable to violence, abuse, exploitation and neglect. In some countries, mothers aren't encouraged to breastfeed kids with disabilities. In some countries, kids with disabilities are forced to use separate restroom facilities out of age-old fears they mat "contaminate" them.

In the United States, parents of kids with disabilities have access to resources and therapies that people in less advanced parts of the world lack. And yet, we also battle forms of discrimination and prejudice toward our kids. The mindsets can seem as if people are living in a developing country, and that's the root of the problem. "Little will change in the lives of children with disabilities unless attitudes change," the report notes, and goes on to say that inclusion in education, sports and other activities is a key way to reduce discrimination, make people aware of a person's abilities and counter stereotypes.

The action steps the report lays out include making sure all countries ratify the Convention on the Rights of Persons with Disabilities and honoring its practices; setting up clear-cut legal entitlement to protection from discrimination; facilitating access to all children's environments—schools, health facilities, public transportation—to allow those with disabilities to live life alongside their peers; and increasing support for families that have kids with special needs and early intervention programs.

"Somewhere, a child is being told that he cannot play because he cannot walk, or another that she cannot learn because she cannot see," said UNICEF executive director Anthony Lake. "That boy deserves a chance to play. And we all benefit when that girl, and all children, can read, learn and contribute. The path forward will be challenging. But children do not accept unnecessary limits. Neither should we."

Parents of kids with special needs certainly don't accept limits. We know what our kids are capable of, and we want—no, we ache—for others to understand that just like any children, ours have potential, too. At school, the park, the playground, the birthday party, we encourage people to see the unique traits and personalities our kids have, just like any children do. The wheelchair, the foot braces, the speech, the shape of their eyes are not our kids' defining characteristics. Who they are is.

It takes government, school and community guidance, programs and interventions to make the world better for kids with disabilities. One person at a time, though, we parents can help change perceptions.

Our basement renovation: the reveal!

noreply@blogger.com (Ellen) — Wed, 05 Jun 2013 10:40:00 +0000

Max isn't so interested in sleeping in his room anymore. Every night, he asks if he can sleep in the basement. It is his new favorite place, where he gets his therapies and plays, and he would happily move in if we let him. I wouldn't mind living there, either, because it is now the most nicely decorated part of our house, so Max and I will have to duke it out.

We renovated the basement to make it more family friendly and create a dedicated space for the therapies Max gets six days a week. He's easily distracted, and so I needed an organized, non-cluttered, zen sort of area, with a little Lightning McQueen thrown in.

BEFORE

AFTER!

It took longer to complete than I expected and more money (a basic truth of any reno project), and serious patience (I almost lost it when I had to screw in a kajillion handles and knobs), but it was all worth it.

The paint is Sherwin-Williams in Friendly Yellow. Choosing the color was a workout—so many yellows! I wanted one that looked sunny, but not too much so that we'd get tired of it. Dave has this bad (or smart) habit of saying "Whatever you like, honey!" so the crowd-sourcing I did here really helped. We used the eco-friendly Emerald Interior Acrylic Latex line for primer and paint; the color is rich, it's washable, it has something in it that stops mold and mildew from forming and it's zero-VOC. That meant it had barely any smell when it went on, so none of us got nasty paint-fume headaches.

The floor is Mannington Adura Luxury Flooring Acacia in African Sunset. I did a lot of research on flooring, and this stuff is excellent quality and seriously good-looking. When I say, "It's vinyl!" nobody believes me; the planks, their color and the grain pattern truly look like wood. It cleans up fast when the kids splatter paint on it.

Laura, a designer at our local IKEA, helped me choose the BESTÅ cabinetry for the back wall. She graphed it out on a computer, and I decided where I wanted the glass panels. The room isn't so big, and I figured having a few clear ones would open up the space.

The paneled BESTÅ Vassbo doors fit in nicely with our traditional-ish decor.

We put Fintorp handles on all the BESTÅ cabinetry, easy for Max to grasp. (The stainless steel ones are discontinued, but they're available in black).

A lot of friends suggested getting a solid sofa, then accessorizing it. For a while I considered a white one, especially since the covers are machine washable and when I googled "IKEA white sofa" I found posts with people gushing about how much they love theirs. But the reality is, I am not the type to diligently pull off chocolate-milk-doused covers and wash them. Pinstripes hide a lot more stains and crud (and now, you probably have no desire to ever come visit me).

This is the Ektorp Loveseat in Åbyn Blue. We got two of them—a sofa was too large for the room. The only problem is that they are so comfy the kids want to lounge on them and have movie night all the time. The red pillows are from Bed, Bath & Beyond and the patterned one that matches the curtains, an IKEA Emmie Kvist Cushion.

I would have never thought to combine a paisley cushion with a pinstripe seat if I hadn't seen it in the showroom, so don't be too impressed.

It was Laura, the IKEA designer, who suggested I put full-length curtains on the rectangular windows that are only a foot high—they give the illusion of length.

I did get a white armchair, the IKEA EKTORP Jennylund Chair. Given that a cover is only $29, I figured I could deal with chocolate-milk (or worse) stains. That's a Kennebunk Home orange throw from Nordstrom.

IKEA Ektorp Foostool in Blekinge white (new cover: $19.99). There's storage space under the seat, handy for toys, books and hiding dirty laundry when guests come over. (Like I said, nobody's ever coming to visit us again.)

Finding a great desk was key; it needed to be solid and durable enough for occupational and speech therapy activities, with room for Max to grow. The chairs had to be comfy and give good support, because he sometimes slumps.

Voila! The Carolina Large Table in White from Pottery Barn Kids, with Carolina Kids Chairs in Navy, has been awesome—and it looks nice, too.

Max loves sitting there with his iPad

I wanted Max to have a couple of different surfaces to practice writing on, so we went with the Chalkboard and Dry Erase Hayden Simply White Utility Boards from Pottery Barn Kids. Plus (center) the Pinboard, for hanging up masterpieces.

Seeing Max write his name is a thrill every single time

Max insisted on having a basket for his BFF. They're from Pottery Barn Kids and they're called...Sabrina Baskets! Sabrina was rather psyched about that.

Max can now beam his speech app onto the TV via Apple TV; hearing "I want macaroni and cheese with ketchup" from a glorious 55-inch screen kind of blows his iPad away. We got the Panasonic VIERA TC-PVT60 3D Plasma HDTV, and it is the best picture quality I've ever seen—sharp, and colors really pop.

The TV's also thin and sleek (exactly what I aspire to in life). We haven't yet let Max watch Cars 2 in 3D on it because of the chance he would not leave the basement for the rest of his life.

I'm a little color-shy, why I called my friend Kristen over for perspective on what to hang on the walls. She introduced me to the wonders of Modern Digital Canvas, glorious images hand-stretched over a canvas that come ready to hang.

The Choti, a daisy on a milk-chocolate background

The requisite Cars wall for Max (RoomMates stick-on decals)...

...and peace signs for Sabrina.

A Lutron Skylark Contour Dimmer—perfect for Max because the slide control is easy to manipulate.

OK, so maybe HGTV won't be giving me my own show or anything, but I am proud of how our basement turned out. When I say to Max, "Mommy did this for you, do you like it?" he says "Eeeyah!" ["Yes!"]—and then he goes right back to playing Cars 2.

Coming up: Our laundry room makeover—more exciting than it sounds, especially because it has inspired Max to do the laundry.

Thanks to IKEA, Pottery Barn Kids, Sherwin-Williams, Panasonic, Mannington, Modern Digital Canvas and Lutron for contributing items to our renovation.

How did you decide on having another kid?

noreply@blogger.com (Ellen) — Tue, 04 Jun 2013 10:42:00 +0000

"I have a question—how a mommy with a first kid with special needs decides to have another kid, especially for autistic kids, they say there is a chance for the second kid to be autistic as well," the email read. "I have one boy and I am not sure if I should have another kid or not, I fear that my second will be autistic as my first. Same time, if the second was a typical kid, I will have someone to take care of the first kid and watch over him in case anything happened to me. I am in a debate inside my mind. Is there any advice you or other mommies can help me with?"

Max had a stroke at birth, and while I did have some anxiety about having another child, Dave and I wholeheartedly knew we wanted a second. For us, going to a high-risk practice helped alleviate a lot of worry. It's different when you have a child with autism, as this mom notes, because there is a proven risk. A 2011 study from The University of California, Davis Mind Institute found that parents who have a kid with autism have about a 1 in 5 chance (18.7 percent) of having a second child with autism.

If you look at the flip side, four out of five children who have a sibling with autism will not develop it themselves. And because the study averaged rates of autism among 664 children, the risk may actually may be lower for some families (and higher for others). As the director of environmental research for Autism Speaks told a New York Times reporter, "Family history is a strong risk factor, but there are other risk factors as well. There are strong environmental risk factors. We don't know what those are yet, but this is not the only factor that goes into an autism diagnosis."

How have you dealt with the decision to have another child? Please share, and help give this mom some perspective.

Taking back the places with the sad memories

noreply@blogger.com (Ellen) — Mon, 03 Jun 2013 10:40:00 +0000

It's been years since we've been to our community pool. We've tried out other smaller pools because Max was never a fan of our local one: Too many kids, too much noise. I never loved it, either. That's because I couldn't get past the sad memories I had of being there with Max as a baby.

We'd try to dip him in the baby pool, but he'd cry. So I'd sit with him under the shade of a huge blue tarp and Dave would go for a swim. I'd watch other tots splashing happily in the pool and crawling on the grass as I held Max in my arms, because he wasn't yet able to crawl. I felt so despondent and alone, as I often did during the first year of Max's life.

So we were back at the pool on Sunday. My eyes immediately went to that big blue tarp, and I remembered. But that was then—and now, Max was so excited to be there. He waded right into the smallest pool, splashed around, made a beeline for a steering wheel that controlled the flow of a mini waterfall.

I sat on the side watching him enjoy. "Does he have autism?" a girl asked me. "No, he has cerebral palsy, and he understands you—go say hello!" And she did, and then Max and her played for a bit.

Slowly but surely, the sad memories of Max's early years have been replaced with good ones. The park where Max couldn't do much except sit on my lap is now a place where he roams free. The mall he refused to go into is a favorite of his. One of the only places I haven't yet reclaimed is the hospital where Max was born. To me, it is the closest place to hell.

Around Max's tenth birthday this past year, I started thinking about going back to the hospital and just sitting in the lobby. I thought it might help replace the memories I have of Max's birth and the two weeks he was in the NICU. I still haven't done it.

This weekend, though, Max and I both found a whole lot of happiness at the pool.

Special Needs Blogger Weekend Link-Up: Go to it!

noreply@blogger.com (Ellen) — Fri, 31 May 2013 10:30:00 +0000

It's another Special Needs Blogger Weekend Link-Up. Get excited!

The idea

Link to 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 the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: My Sister Sabrina Rocks—When She's Nice To Me

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!

A kid with Down syndrome in a TV commercial: progress!

noreply@blogger.com (Ellen) — Thu, 30 May 2013 10:40:00 +0000

In the last few years, I've seen a handful of kids with special needs in ads (including a Girl Scouts catalog). But I've never seen a TV commercial with a child who has special needs until recently, when a reader told me about one. This Care.com commercial features a bunch of cute kids including Carter Murai, a 7-year-old with Down syndrome. What he likes in a babysitter: "Someone who loves bubbles!"

Carter's a first-grader in Bedford, New Hampshire who loves to dance and perform; his parents responded to a Care.com casting call. His speech pathologist at school helped him practice his part. Although he lost his two front teeth before filming started, he spoke his part like a champ.

In a perfect world, kids with special needs in ads would be an ordinary, everyday thing. In the real world, it's still rare. Last year, when adorable tot with DS Valentina Guerrero landed on the cover of a swimwear catalog, I was thrilled with all the attention it received. The more companies realize including kids with special needs in ads is a great thing, the more it will happen.

Are these companies including kids with special needs to boost business? Of course they are. Companies have roped in adorable kids to tout their services and products since the dawn of commercials. Why shouldn't kids with special needs be part of that, too? Our children are not the least bit cuteness-challenged.

I've done work with Care.com (which has a dedicated special needs section), and asked founder and CEO Sheila Marcelo why they didn't make a big deal out of featuring Carter in the commercial. She said, "We didn't see the need to promote his inclusion because we just don't see him as different from any other child who needs care. He was a star on the set!"

Love that. Hoping this commercial will inspire more companies to do the same. Come to think of it, it's time Max broke into modeling, so he can support his Cars 2 merchandise habit. I'll get on that right away.

The most exciting ride in the history of amusement park rides

noreply@blogger.com (Ellen) — Wed, 29 May 2013 10:39:00 +0000

We had a whole lot of thrills this weekend, starting with a visit to the Jersey shore for the first time since Sandy. The city we usually go to, Wildwood, wasn't hard hit and it was a relief to see it booming on Memorial Day weekend.

The weather was chilly, so we hung out on the boardwalk a lot. Max wanted to ride the tram back and forth (and back and forth and back and forth etc.). Sitting around and staring into space is one of my new favorite hobbies, so I liked that too.

Sabrina won a gigantic stuffed banana, which has given us enough joke fodder for the rest of our lives. Then we came upon Governor Chris Christie, making the rounds. "Hello, young lady!" he said. (He was, of course, talking to me.)

Max had no interest in a photo opp because that boy had places to go! As in, the rides at Mariner's Landing Pier. The ones he loves are for little kids, and as I watched him make a beeline for his favorite I had deja vu: Here we are again, one year later, same rides. And a twinge of concern. Max is getting to be a big kid and when he's still into kiddie stuff, whether it's the Disney Jr. channel or amusement park rides, it worries me.

But I pushed those thoughts back, and focused on how far Max has come from when he was a tot and rides scared the heck out of him. Ultimately, I have to keep reminding myself, it's all about Max's happiness—and he is full of bliss when he is riding that train, boat, car and bus.

Then we got to the bumper cars and for the first time, Max wanted to try them. He asked me to jump into one with him, but there was no way I was fitting (especially after the cheesesteak I'd downed the night before). "Max, you can drive yourself!" I said, and walked him over to a car.

I showed him the gas pedal, explained that he had to press it to make it go and pressed his right foot onto it to demonstrate. Then I asked the attendant if he could help Max if he got stuck; Max has issues with coordinating foot movement.

Well, Max Mario Andretti proceeded to maneuver that bumper car like he'd been driving one all his life. That's him in the back with the red jacket.

I'm pretty sure I was the only mom standing at the bumper cars getting all choked up.

But if he asks to borrow the car keys, I'm saying no.

8 ways to include kids with special needs in sports and other activities

noreply@blogger.com (Ellen) — Tue, 28 May 2013 10:40:00 +0000

The other day, when I got home from work, Max and the babysitter were playing basketball with kids on our block. They were handing Max the ball, he was grasping it with both hands (major feat!) and throwing it. It was a phenomenal sight to see him involved with other kids that way.

I've often struggled with figuring out how to get kids, both in our neighborhood and whenever we're in a play situation, to naturally include Max in games. I don't always have the answers—but Barbara Oswald, Director of Youth Initiatives & Program Development for Special Olympics South Carolina, does. She oversees that division's Project Unify, an innovative program designed to boost acceptance among students through school projects and sports for Special Olympics athletes and student volunteers. They were recently awarded a $25,000 grant by CVS Caremark Charitable Trust, one of 66 non-profits to receive $2.6 million for programs in 2013 (I'm a proud blogger ambassador for CVS Caremark All Kids Can). There are currently 42 Project Unify programs in the country, increasing to 45 in the next school year.

These are Barbara's top tips for encouraging inclusion in sports and activities:

Think small

I'm always wondering how to rope in all the kids on our block to include Max, but Barbara pointed out it would be best to focus on getting one kid onboard. As she says, "One strong-character kid can go a long way to developing a friendship." She recommends inviting one kid over for a playdate to the house, a place where your child will be at his most comfortable. "It's cool to see kids with special needs sharing their interests—and recruiting their own friends themselves," she says. "Start with one peer who becomes a friend, then add others in."

Don't make a big deal about it

"Asking another mom about a playdate is a good way to go—just say 'I would love for Jake to come over and play t-ball,'" she says. There's no need to get into why you want this, or mention things like "He really needs to have more kids without special needs in his life!" Notes Barbara, "That mom may feel like it's a lot of pressure for their kid. Just inviting that other child over to play is saying it all, no explanation necessary. It's like any mom asking for a playdate."

Find a sport that works for everyone

A child in a wheelchair could play T-ball with a friend, for instance. "Activity lowers the discomfort for the other child of not knowing what to do because they aren't regularly around kids with special needs," points out Barbara. "There is no awkward silence! It doesn't take kids long to endear themselves to each other."

Encourage kids to find a role for your child

Sports skills not being equal, "It's important for kids with special needs to have a meaningful role in the activity," says Barbara. "That may not mean be being a point guard on a basketball court, but maybe it's keeping score. There are lots of different scenarios. Once a child has friends and peers and they are comfortable with each other, that can happen very naturally. You will be amazed how kids who have developed relationships with kids who have special needs can think of ways to include them. A lot of times students come up with the best ideas for meaningful roles! That's a better relationship builder than an adult jumping in and trying to do it."

Give guidance as necessary

If kids aren't figuring out how to include your child, says Barbara, "you could make a suggestion like 'How about Max gets the balls that bounce away?' Ultimately, you want your child to feel needed and part of the game."

Focus on skills

"With Special Olympics we have individualized skill training—so with basketball, for instance, we break down the skill so they compete in skills sets, as opposed to full-court basketball," says Barbara. "A child with special needs and a peer can practice passing, or dribbling, or those sorts of things, something that can be effective for kids at all levels of abilities."

Pump up the other kid

"It's a great thing for a kid without special needs to be empowered as a coach or mentor," says Barbara. "You can say things like, 'You are a really awesome baseball player. Do you think you could work with Max on his t-ball?' That flips around how that child feels about the situation. So many kids are looking for ways to step up as a leader, and being a friend or advocate for a child is a great role for a kid. It takes confidence for a kid to take those leadership moments. I am constantly amazed by how youth without special needs are the best advocates for kids with special needs. At one school with a peer tutor program, a young man without special needs invited his friend with special needs to sit with him at the lunch table. That is a huge statement!"

Remember, inclusion benefits everyone

"A child who mentors, coaches or befriends a kid will get as much out of a child with special needs as vice versa," says Barbara. "Typically, kids with special needs teach more about the human spirit, perseverance and smiling in the face of adversity than any other population on the planet."

To find a Project Unify program and other Special Olympics activities at your local branch, visit the Special Olympics site.

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Special Needs Blogger Weekend Link-Up: long weekend edition!

noreply@blogger.com (Ellen) — Fri, 24 May 2013 10:40:00 +0000

It's another Special Needs Blogger Weekend Link-Up, and it'll be up through Memorial Day.

The idea

Link to 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 Have Shampoo-Commercial Hair, And My Mom's Jealous

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!

Kids' favorite security objects: Max's new crush

noreply@blogger.com (Ellen) — Thu, 23 May 2013 10:40:00 +0000

In recent years, Max has had many objects of affection: The plastic bowl, plate and cup he liked to sleep next to. The Cars 2 CD player we got for his birthday that he'd literally just sit and gaze at in awe. A purple Halloween pail he took everywhere, including school. A gigantic purple bowl he painted at a pottery place that we once had to bring on a hike.

And now, Max is glued to a Cars 2 tin lunchbox. He literally won't leave home without it. We'll almost make it to the car when all of a sudden he'll announce "Lunchbox!" (sounds like "uh-ah!") and one of us will have to run in and get it. The lunchbox contains a carton of chocolate milk and an applesauce cup, in case of snack emergency. Max has never once touched them; he just likes toting them around. And not for nothing, clutching the handle does his fine-motor skills good.

Max took his lunchbox to Sabrina's cabaret show this weekend. She's been in a performance class and they were singing Thriller. Max has gotten comfortable going to his own school shows, but he's never attended anything Sabrina's been in. Armed with his trusty headphones and lunchbox, though, off we went.

Max hovered in the back by the door, just in case he had to make a quick getaway, but he stayed in the auditorium. He showed a few people the lunchbox so they could see how cool it was. He watched the show in fascination. He stayed the entire time—and then he didn't want to leave.

I've got to figure out more ways to take advantage of his new lunchbox confidence.

So, what's your child's fave security object?

12 things I learned in First Aid that you oughta know

noreply@blogger.com (Ellen) — Wed, 22 May 2013 10:40:00 +0000

To my long list of accomplishments—including but not limited to Butt Wiper and Master Laundress—I can now add Certified in First Aid. I took the American Heart Association Basic Life Support Course for our Girl Scout troop last week, and learned a whole lot from the instructor and the Academy-Award level actors featured in the course DVD.

I picked up some really useful info, including several things that surprised me, and I'm sharing. What I'm telling you, of course, is not a substitute for actually taking the course (sorry, you don't get off that easy)! But you never know when these tips might come in handy.

It's better to use a landline to call 911
If you call from a cell phone, emergency responders likely won't be able to detect your exact location so you have to tell them where you are; that could be an issue if, say, a parent is injured and a child with speech issues is calling. Dial from a landline and your exact home address will instantly flash on the operator's screen. (Here's a good Consumer Reports article on this.)

The full dose of an Epi-Pen Jr. is TWO of them
Max has a peanut allergy so I carry around one Epi-Pen Jr from the two-pack, and keep the other at home. Wrong, as it turns out; the full dose is TWO. As in, if the injected one does not stop an anaphylactic reaction, you need to use the second pen. The info about dosage on the EpiPen site notes that up to 20 percent of patients may require a second dose. File this one under Clueless Mom Moments.

To stop bleeding, apply pressure and don't remove the gauze
If a wound is gushing blood, place a gauze pad, clean cloth or a gloved hand over it and apply pressure. If that doesn't stop bleeding, do not remove the dressing or you could mess up the clotting that's started to form. Instead, add another layer of gauze and press harder.

Tip the forehead forward to stop a nosebleed
Have the person sit and lean forward, then press both side of the nostrils for a few minutes until bleeding stops. If you can't stop the bleeding in about 15 minutes, it's heavy (as in, gushing blood) or the person has trouble breathing, call 911. And if your child has just bled all over your Shabby Chic sofa, call your husband and wail.

Tourniquets save lives
The instructor spoke of the tourniquets used after the Boston Marathon bombings that helped save lives by stopping blood flow. It's pretty easy to make one: Fold a cloth or cravat so it's long, and at least one-inch wide. (In Boston, they made them from t-shirts and belts.) Wrap it about two inches above the injury. Tie a half-knot, like the first part of tying your shoelaces. Place a stick, a screwdriver or something similar on the half-knot, then tie a full knot over that. Then just turn the stick to tighten the tourniquet, continue tightening until the bleeding stops then tie it again. (Here's a good YouTube video on making a tourniquet.) It's important that medical personnel know what time the tourniquet was placed; our instructor suggested writing it on the victim's forehead, so it can't be missed.

To deal with a tooth injury:
• If the tooth is just loose, have the person bite down on a piece of gauze to keep it in place and call a dentist.
• If the tooth has come out, apply pressure with gauze to stop bleeding at the empty socket, then put the tooth in a cup of milk or clean water and bring the person to a dentist or ER. Remember not to drink from the cup with the floating tooth.

To deal with a sprain:
Put a plastic bag filled with ice and water on the hurt area, with a towel between the ice-bag and skin for up to 20 minutes. Cold packs are not as effective as ice and water. Pinot Grigio may as effective for adults.

To make a simple splint:
A rolled up magazine that cradles the arm or ankle gives really effective support until you can get to a doc. An issue of Martha Stewart Living will look especially lovely. Place the magazine so that it extends beyond the injured area and supports the joints above and below. Tie with tape, gauze or cloth. Note: A pillow can also work effectively for splinting a foot or ankle. It's best to keep the shoe on—the compression helps prevent additional swelling.

To treat burns:
For small burns, run under cool but not ice-cold water until the burn doesn't hurt. Cover with a dry, nonstick dressing. Do not use ointment.

And if someone's bitten by a tick...
Using tweezers, grab the tick by its mouth or head as close to the skin as possible and lift it straight out without twisting or squeezing its body or noting how much it looks like your mother-in-law. Lift the tick until the person's skin "tents," wait for several seconds and the tick may release its grip. If someone suggests dousing the area with hydrogen peroxide, do not listen—this will force a tick to, as the instructor said, "puke its guts out into your body." You also want to save the little bugger in a plastic bag and give it to the doc, because they can test for disease.

Diabetics experiencing low blood sugar need sugar

If you're ever around a diabetic who gets woozy, pale or otherwise seems ill, immediately give them fruit juice, milk, sugar, honey or a regular soft drink, not a diet one. (Yes, it seems rather obvious that you should not give someone in need of sugar a Diet Coke, but the manual mentioned it so people must do it.)

The signs of a stroke: think STR

• The person is unable to SMILE symmetrically

• The person cannot TALK lucidly or clearly, and speech is impaired

• The person cannot RAISE their arms symmetrically, or even at all.

There's not any First Aid you can administer; call 911 asap, because the new treatments that reduce damage from stroke and improve recovery must be given within the first hours after the first signs of stroke appear.

Hope you found this helpful! I'll be quizzing you tomorrow.

Image: Flickr/Marcin Wichary

There is no compassion fatigue

noreply@blogger.com (Ellen) — Tue, 21 May 2013 10:50:00 +0000

A few years ago, I was part of a panel at a blogger conference. The topic we spoke about: compassion fatigue. Theory being, people these days are so bombarded by causes and tragedy via social media that they tune out. I didn't completely agree that this was a widespread phenomenon; with the outpouring of caring and support after disasters, natural or not, just the opposite is proving to be true.

I've thought a lot about that talk this past year with every passing horror: Hurricane Sandy, Newtown, the Boston bombings, the Bangladesh garment factory collapse, the Texas tornadoes. And now, the devastating Oklahoma tornado, with 24 confirmed dead, including 9 children, and hundreds injured.

I've wept nonstop as I've watched the news. I've made donations. And I'm sure you have felt and done the same. While it may be hard for the mind to comprehend just what the families of victims' go through, the human heart has no such boundaries. It's expansive enough to take in grief again and again, and big enough to make us want to do what we can to help our fellow human beings. We have an infinite capacity for prayers and wishes. No matter what our own circumstances or personal struggles, we feel compassion again and again. There is no fatigue there.

The major disaster relief organizations including the American Red Cross, Salvation Army, United Way and Save the Children are soliciting donations; other non-profits to consider:

Feeding America will be sending truckloads of food, water and supplies to Oklahoma.

Operation USA is gathering emergency and shelter supplies to help community-based health organizations in Oklahoma recover.

Habitat for Humanity will assist with cleanup, repairs and any necessary new construction.

Oklahoma Baptist Disaster Relief has sent out dozens of volunteers to set up mobile kitchens and feeding units.

If you live in the affected area, I hope you and your family are safe. If you have family there, I hope they are OK. And if you know of a family who needs help, let us know what we can do.

Image: Wikimedia/US National Weather Service

Every bit of progress is a big deal

noreply@blogger.com (Ellen) — Mon, 20 May 2013 10:40:00 +0000

"One small consonant, one giant leap for Max-kind!!!" I posted on Facebook this Saturday. Max had just made a "k" sound for the first time during his morning speech therapy session with J, the speech therapist he's had since he was a baby. Max has all the vowel sounds in his repertoire but few consonants—m, n, the rare d.

This mostly has to do with Max's challenges with tongue coordination and jaw control; to say a "k" and a hard "g" as in "gum" you use the back part of your tongue, not a movement that comes naturally to him. Letters like "p" and "b" require lip closure, also not something Max instinctively does. It all has to be coaxed out of him and it will only happen—as is true of all progress he's made—when he is ready.

Furby may or may not have had something to do with the "k." Friday night, I woke up at 2:00 a.m. to the sound of Max babbling with Furby. This is not typical behavior, both because Max doesn't usually babble and at that hour he usually wanders into our room and tries to crash in our bed. But there he was in his room, chattering away. He didn't seem at all put off by the fact that one of Furby's favorite phrases is "Blah, blah, blah." Happily, he didn't obey when Furby exclaimed "Party time!"

Saturday morning, when Max's therapy session started, I left the house to drop off Sabrina at a performance class she's taking. When I came home, J told me "He said a 'k'!'" And I was all, "WOW! I want to hear!" J pointed to the word "key" she'd written on a piece of paper. Max said "eeee!" Then J prompted him by placing her fingers way back on his chin, at which point he said a distinctive "key!" I did my usual "Wheeeee!" happy dance (yeah, I actually do this little dance), and Max giggled. I could tell he was seriously proud of himself. I was, too.

Of course, the rest of the weekend I kept trying to get him to say "k." I'd whip out my car keys or house keys and ask "Max, what is this?" Sabrina joined in too: "KEY, Max!" she'd say. "NOT PEE! KEY!" I did get a couple more clear "Keys!" out of him. I am greedy that way.

Of all Max's challenges, speech has been the slowest to progress. I am thrilled Max makes good use of his speech app, but he's been trying so hard to articulate words lately and it's clear he really wants to verbally communicate. The challenge is that it's hard to know exactly what he is saying. He'll try and try until I finally tell him, "Show me on the iPad." And then he'll either tap a phrase or spell the words out.

The "k" (my new favorite letter of the alphabet) has opened opened the floodgates of hope that this is the start of better articulation, and that maybe Max will be adding more consonants to his sounds. J says we need to keep practicing with the Chewy Tubes and Bite Blocks, placing them on his back molars before mealtimes and encouraging him to bite on them to strengthen his jaw. Too bad there's no app for that.

Max fell asleep Sunday night talking to Furby. Here's a recording, made in the dark; those sounds in the background are Sabrina saying "That thing is distracting me!" and Dave and I cracking up.

I sincerely hope Max doesn't start talking Valley Girl gibberish, which is basically how Furby sounds. But anything that encourages him to chat and mimic sounds is good by me. And if he picks up the phrase "blah, blah, blah," I'll be one seriously happy mom.

Special Needs Blogger Weekend Link-Up: Posts galore!

noreply@blogger.com (Ellen) — Fri, 17 May 2013 10:40:00 +0000

It's another Special Needs Blogger Weekend Link-Up, a post extravaganza the likes of which mankind has never seen. Or something like that.

The idea

Link to 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: Is It Friday Yet?

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!

The aliens on our lawn

noreply@blogger.com (Ellen) — Thu, 16 May 2013 10:40:00 +0000

People, I need your help before our entire family falls victim to alien invaders that are disguised as onion grass.

The grass first appeared last year in the bed of plants on our front lawn. I'd never seen it before and I am usually clueless about detecting what's weed and what's plant, but I knew this stuff had to go. When I pulled up some stalks, I realized they smelled strangely like onion. Then I pulled up the roots and holy cow, there were little onion bulbs down there. I thought they were creepy, like some alien plant had invaded our lawn.

I immediately posted on our town's community bulletin board. "How do I get rid of onion grass?" I asked—and got a whole bunch of responses about how lovely it tastes in salads.

I spent a few hours last summer pulling the stuff out at the roots. Sabrina pitched in for about two minutes before realizing how annoying the task is.

This year, the onion grass has returned in full force. Now it's not just in the plant bed—it's on the front and back lawns, too. Yes, the aliens have returned and this time, they may just morph into evil extraterrestrials who take over our lives and minds and this blog, which will be renamed Love That Onion Grass. If that should happen, please immediately alert the authorities!

This is one of a series of weird nature happenings at our home, including but not limited to the dead birds and the squirrel who liked Justin Bieber. Meanwhile, I do like coming home to a nice-looking front lawn that does not have an alien presence, so I have spent several weekend afternoons cutting off the onion grass stalk by agonizing stalk and spritzing weed killer, which is what the guy at the garden store said to do.

It's been a losing battle: More onion grass keeps coming up. Dave could care less about it, which he will surely regret when the plants attack us in the middle of the night. Also: I do not want to spend any more of my precious free time dealing with it, time that could be spent on the kids and/or watching HGTV.

This is where you come in. Would you swing by and help me pull it? He he, I would never expect that of you. So could you just send your husbands? He he. Seriously, folks (and onion grass is no laughing matter, we're talking about a national security issue!): I have gotten such amazing advice here over the years and was wondering what sort of suggestions you might have about dealing with it, and preventing it from returning.

Nobody suggest onion tart or onion dip or I'm coming to your house and planting some onion grass.

Image of onion grass that makes it look far too lovely: Wikimedia/Maxiegran

Please, spare kids with special needs the pity

noreply@blogger.com (Ellen) — Wed, 15 May 2013 10:40:00 +0000

I have an allergic reaction to pity for Max. When people look at him as if he is pathetic (aka The Pity Stare), or cock their head and say "Awwwwww..." if I mention he has cerebral palsy—even as Max is standing there, looking perfectly happy—my face turns a little blotchy, I have to swallow hard, I get a bit prickly.

I realize that the pity isn't coming from a bad place. Usually, it's misguided kindness. A lot of people out there have no real experience with kids who have special needs and they just think our kids have it bad, so bad. Still, it rankles.

So you can imagine my reaction to the song "Unlucky Child" and the accompanying video about Aden, a 6-year-old boy with cerebral palsy. The singer, Ireland's Marian Bradfield, was inspired to write the song after seeing a documentary about Irish poet and author Christopher Nolan, who had CP and super-supportive parents.

The lyrics and Aden's presence seem incongruous. There's Aden going about life at school and at play, laughing and being his beautiful self. And there are the maudlin lyrics and music telling us all how unlucky he is.

Let me just ask...

Why focus on unlucky?
Do I think Max is lucky for having cerebral palsy? Hell no. Do I choose to make that a focal point of his existence? Hell no. The cerebral palsy is one part of who he is. It does not define his existence and make him—or Aden or any of our kids—an "unlucky child."

Why so morose?
Marian has a beautiful, soulful voice—but could she have seemed any sadder, as if someone had died?

Why thank parents for loving the child?
"Thank you for giving so much love to me, an unlucky child," the refrain goes. Alert! Alert! We parents of kids with special needs love them because they are our children. It's not as if I am doing Max some major favor loving him because he has special needs. Loving our kids is what we parents do. Our love is unconditional.

Why all the focus on what a child can't do, instead of what he can?
"I'll never run with you but I feel your touch just the same..."
"Some kids are better off than me, they can run and jump and play..."
"I'll never speak to you but I hear you call my name..." sings Marian.
Someone should inform her about speech communication apps. And about not comparing kids with disabilities to other kids—"better off" is subjective.

Also: Aden does not need to be set "free," as if he is imprisoned. Sure, children can look in his eyes and "see his dreams" but they can also try talking to him.

I know, I'm so grouchy about this video, and the singer meant well. How many singers out there have written songs about kids with cerebral palsy? Right. Too bad it's so sad.

A co-producer of the film, Mike Considine of Chicago's Cross Country Productions, first told me about the video. When I emailed my reaction, he said the purpose of the song and video is to "show how children with special needs can enjoy and make the most of their abilities." He reassured me that Aden's parents and Marian spoke, so "everyone understood the meaning of the song." The video crew generously did the project free of charge, because they felt it was an important message to get out there.

The video does provide a glimpse of what it's like to have Aden's form of cerebral palsy, and what it means to parent Aden. The message at the end is positive and awesome. Yet that doesn't balance the fact that the song is laced with woe-is-he pity.

This is what I'd like to tell the people of this world who pity children with special needs:

Our kids have a great love for life. Aden does, as you can see in the video. Max finds joy in the same things other kids do—ice-cream, firetrucks, movies, farts. He is not sad about who he is. Do not be sad about him. Do not cast a gloomy shadow onto his sunny presence.

Our kids might not move or talk like other kids do, and may require significant help from their families, but they do things in their own way. Or they don't do them but they adapt. Different is not pathetic. Delayed is not pathetic. Dependent is not pathetic.

Our kids have more determination in their little bodies than some people will have in a lifetime.

Our kids have abilities. Real abilities. You just have to peer past the wheelchairs and the cerebral palsy and the disabilities to discover them. Break out of the pity trance, people, and say "Hi." Encourage your kids to do the same.

Our kids are achieving all the time, something worth celebrating. Sometimes the progress may not seem major to others. But in our world, learning to grasp a spoon or magic marker or articulate a new sound are a Big Deal. We parents are thrilled with the inchstones.

Our kids deserve respect and equal treatment, not pity.

Max is not yet aware of the pity factor, and I hope he never will be: How crushing would it be to know that others think you are a lesser human being? Or that you are an "unlucky child" (who grows into an unlucky adult)? Our kids need every bit of confidence they can get in this world.

As Max's mom, I need empowerment too. And when someone makes my child out to be a sad, unlucky story, it's unsettling—and sad.

I invite Marian to make a sequel to the song. She can call it "An Amazing Child."

Photo: Screengrab, An Unlucky Child video