Love That Max

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-Commerical 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

A good iPad case for kids with special needs: giveaway!

noreply@blogger.com (Ellen) — Tue, 14 May 2013 10:45:00 +0000

A good iPad case for kids with special needs is hard to find. This I know because we've been through a bunch, and none of them were easy for Max to grasp. Then Max's speech therapist at school recommended the Gripcase, the company sent me one and a stand to trial, and we are in love.

The case is really easy for a kid with fine-motor skills to grasp, because of the cut-out design. It's super lightweight—7.05 ounces, made of some high-tech foam. It's shock resistant, and has bounced impressively when Max has accidentally dropped it. It's easily washable. Also key (for us, anyway): It comes in purple! As well as black, blue, green and red. It fits 2nd, 3rd and 4th generation iPads. The one add-on you might want to consider is a clear screen protector, in case your child drools.

The back of the case

Max totes his Gripcase into a restaurant. As if he's headed to a business lunch! You know, like any exec who wears shorts and Lighting McQueen sneakers.

I'm giving away two Gripcases in your child's choice of color.

One is donated by the company, one I'm buying. Each case is worth $39. You can enter below; the giveaway ends 5/22/2013 at 11:59 p.m. (see "Terms and Conditions" for more information).

a Rafflecopter giveaway

This mom's not judging you

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

A whopping 95 percent of moms feel negatively judged on their parenting decisions, finds The National Motherhood Decisions Survey. I heard about the results—based on responses from 1100 moms with kids ages 1 to 5—last week at the StrongMoms Empowerment Summit in New York, hosted by The Moms. The women polled felt judged on decisions including parenting approaches, work and feeding their babies.

It's shocking to hear that so many moms feel that way. Yes, there have been times I've felt judged by moms in Sabrina's circle, particularly one time in preschool when I showed up to an event late because of work and I got stares from a couple of moms. With Max, though, I can honestly say I've never felt judged that way. Maybe because I'm typically so immersed in helping him that I haven't noticed, but most likely because I get a pass from mothers of so-called typical kids—and special needs moms don't radiate that judgment vibe.

One of the many gifts Max has given me, including a more open mind and an intricate knowledge of all things Lightning McQueen, is a heightened sense of empathy. When I'm out and I see a kid melting down, I never assume the kid is a brat with an ineffective mom. I wonder if the kid has sensory issues, like Max does. I give that mom an I-know-how-it-goes smile. I am that mom. As for working moms, well, no judgment there because I'm one of them, and have been since Max was a baby. I work to earn an income for my family, I work because I like what I do, I work because it gives me life balance.

Oh, yeah, I have judgment in me. I disdain parents who freely curse around their kids, and I don't mean accidentally dropping an f-bomb, I mean as a regular part of conversation (weirdly, I've overheard a lot of that at Sesame Place). I flinch when I see kids on leashes/harnesses, though I realize that sometimes—especially for kids with special needs—it's for their own protection. And bad grammar bugs me (I'm an editor, I can't help it). But I'll never judge you for feeding your kids junk food, for snapping at them, for checking email while you're at the playground, for missing the school play, for using formula over breastfeeding or for other typical perceived mom "wrongs."

"There is no way to be a perfect mother and a million ways to be a good one," said author Jill Churchill. There are a million ways to be a mediocre mother, too, and sometimes that's what we are. When we have nothing left in us to give, maybe we let our kids watch more TV than they should, we cave to their demands when we know we shouldn't, we make them go to sleep way early. Been there, done that.

But typically, we do so much for our children, we care so deeply. This judgment thing would die down if more moms embraced empathy and one basic truth: We're just trying to do the best we can.

Image: Flickr

Special Needs Blogger Weekend Link-Up: Good times

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

Welcome to another Special Needs Blogger Weekend Link-Up, the most fun you can have while typing. Um, kinda sorta.

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: Mother's Day Should Be Every Day

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!

Congratulations: You're Mom of the Year!

noreply@blogger.com (Ellen) — Thu, 09 May 2013 10:39:00 +0000

Dear You,

We are pleased to inform you that you have won the title of Mom of the Year. Congratulations! After carefully judging and evaluating all the moms in the entire universe, including but not limited to Gwyneth Paltrow, Snooki, Octomom and Tanning Bed Mom, we have selected you.

This award is given to you...

☆  For tirelessly escorting your child to the doctor, therapist and specialist—sometimes all in one day.
☆  For juggling the scheduling of these appointments and demonstrating super-human feats of memory, patience and sweet-talking receptionists into fitting you in.
☆  For always knowing what your child wants to say, even when his speech isn't clear or he can only express himself through his eyes.
☆  For surviving the sensory-induced meltdowns in public places, especially the airport security line.
☆  For your mastery of medical terminology; heck, you deserve an honorary MD.
☆  For the nonstop coaxing you do that other moms know nothing of: encouraging your child to pull to stand, grasp a spoon, push a button on a toy, climb a step, make eye contact, say "Hi."

☆ For the outstanding "WOO HOO! YOU DID IT!" enthusiasm.

☆ For filling out more forms than you ever thought humanly possible.
☆ For regularly doing the exercises the therapists recommend. Well, usually doing them. Well, OK, some days doing none of them but you happen to be human.

☆ For staying strong, so strong, when you've watched younger children doing stuff your child isn't yet up to and your heart felt like it could implode.
☆ For all the hard, back-breaking labor: lifting your child in and out of the car, in and out of the bathtub, into the chair, up onto the changing table.

☆ For your uncanny ability to not look like a sleep-deprived stress mess.

☆  For your open-mindedness to trying new tactics, strategies, gadgets, equipment—anything and everything that might help.
☆  For the extreme hope and determination you have that, yes, your child will accomplish that.
☆  For your nonstop efforts to get others to see the ability behind the disability.

☆ For keeping your cool (well, on the outside) when people stare.

☆ For paving the way for your child at the playground, at the birthday party, at the bookstore or wherever kids aren't quite sure how to interact with him.

☆  For valiantly doing battle with the insurance company to reimburse you for claims.
☆  For not acting on your insurance company revenge fantasies.
☆  For powering on even when all you want to do is hide under your comforter, sleep, cry and/or generally lose it.

☆ For pushing for the services your child needs at the IEP, then pushing some more.

☆ For always remembering to give the medicine/put on the braces/bring the headphones/pack the EpiPen/get the blood test/[fill in the responsibility].

☆ For repeatedly and patiently explaining to family that he's not going to "grow out of it."

☆ For being your child's best champion every single day of the year.

Congratulations again on this honor! Nobody deserves it more than you.

Should people who steal handicap parking spots be shamed on Facebook?

noreply@blogger.com (Ellen) — Wed, 08 May 2013 10:38:00 +0000

Park in a spot in New Zealand reserved for the disabled without displaying the permit and you risk being shamed on the Facebook page You've Got My Car Park, Want My Disability Too? So far, contributors have posted 100 photos of vehicles without proper redentials—license plates visible and in some cases the drivers as well. Started by a disgruntled wheelchair user who, reportedly, was late for a job interview because a non-permitted car was in the handicap spot, the page has been racking up Likes.

The problem is rampant here too. Last holiday season, Illinois cracked down on on people illegally parked in disability spots at malls; police handed out 166 citations and raked in $71,250 in fines. In January, New Jersey enacted a bill to prevent the misuse of disability vehicle ID cards and placards. Washington state and municipalities around the country have had similar crackdowns.

I'd like to see more of these ethics-deprived people get fined—hit 'em where it really hurts, their wallets. An app called Parking Mobility allows people to snap photos of a vehicle parked in a handicap spot without a proper plate or decal, and zap it to city officials to issue a ticket. First, however, your city needs to get with the program.

This is all easy for me to say because I'm not the victim here, nor do I deal with this situation with Max. I get how satisfying it could feel to out people who disrespect disability. There have been times when I've been tempted to snap iPhone pictures of people who openly gawk or glare at Max and post them on Facebook.

So far, a few offenders listed on that Facebook page have apologized, though most probably have no clue they've been exposed. It seems like the best possible result of this effort is that it will raise media and public awareness, forcing authorities to pay more attention to the problem and getting people to think twice about swiping these spots (excellent video, below).

What do you think about Facebook shaming people who park in spots for people with disabilities?

Image: Flickr/Sam Felder

And then I became a Girl Scout Leader

noreply@blogger.com (Ellen) — Tue, 07 May 2013 10:39:00 +0000

I've been running a Girl Scout troop, since last year. This weekend I survived our first campout—although we slept in a cabin, with a kitchen and bathrooms, and the roughest patch was when the water for the girls' pasta dinner took 45 minutes to boil in the giant pot. Highlights of the trip included s'mores and songs over a campfire, teaching the girls Red Rover (remember that game?), a hike to waterfalls where we only got mildly lost and not having to talk about Cars 2.

I started the troop after realizing I had entirely too much free time on my hands. Um, right. What happened was, Sabrina couldn't join an after-school troop because I'm at work then, no other ones in our area met in the evenings and I wanted her to have the experience. Before I committed to it, I asked a friend's advice. She said, "What's one more thing you don't have time to do?"

Our Brownie troop is run as a co-op, which helps—I plan activities and outings, order supplies and pass along news and information, and moms take turns running meetings. I often find myself staring at my computer screen at 12:30 a.m. catching up on emails and organizing things, which takes twice as long to do when it's twelve freaking thirty in the morning.

No worries, I won't be begging you to buy Girl Scout cookies because I already polished off the boxes we had left, although next cookie season I might ask you to come to my house and physically restrain me from reaching for Samoas.

The girls are awesome. A couple of parents have made things a leetle challenging, and I will just leave it at that. Soon I'll be getting First Aid and CPR training (useful life skills to have), along with becoming Outdoor Certified so I can start campfires (a useful life skill for working in an office, should we ever get stuck there in an emergency without electricity and we need to make s'mores).

Sabrina's in excellent company; former Girl Scouts include Michelle Obama, Hillary Rodham Clinton, Chelsea Clinton, Lara Bush, Madeleine Albright, Sandra Day O'Connor, Katie Couric, Barbara Walters, Venus Williams, Lucille Ball, Gloria Steinem and Celine Dion, who must have been fun to have at sing-a-longs.

Last week, Sabrina asked "Mommy, are you going to be the leader next year? I like that you're the leader." Which made it all worth it. Because I do so much for Max, and this is one thing that's all about her.

I do love those s'mores—and campfire cuddles.

Another one of those unexpected milestones

noreply@blogger.com (Ellen) — Mon, 06 May 2013 10:42:00 +0000

The physical milestones are most noticeable, like Max playing catch with Dave this weekend. He caught the ball by himself, with both hands, the two of them standing several feet apart. And he did it again and again. Dave and I are aware of physical things Max isn't yet doing, like jumping and swimming, so when he does them we're awed. "YEAH, MAX!" jump-up-and-down awed (that's me, Dave gives him a high five).

The cognitive developments tend to take us by surprise, mainly because they're things we hadn't realized Max wasn't doing. Like, say, choosing items off a menu. Or caring about how his hair looks. Or understanding the meaning of "today" and "tomorrow." It's easy to notice the physical stuff that's not happening for Max, mainly because we see Sabrina or other kids doing them. But all those everyday thought processes and realizations, not so much.

So when Max thinks to do something new, it's both exciting and fascinating. I wonder what's happening in his brain, what connection was made, what light just blinked "on." Like this weekend, when he asked to spritz air freshener after using the bathroom. Definitely not an achievement in the What To Expect books. Definitely not something I would have brought up during a visit to the neurologist ("So, doc, do you think Max will be into air freshener anytime soon? What's the timeline on that, do you suppose?")

I've used the stuff for Max post-potty, and he's never suggested it himself. But when Dave was helping him out in the bathroom yesterday, he opened the cabinet beneath the sink and pointed to the canister. This is progress—in terms of cognition, consideration and self-awareness. Come to think of it, he's more advanced than Dave is in that department.

Special Needs Blogger Weekend Link-Up: You know what to do!

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

Welcome to another Special Needs Blogger Weekend Link-Up, a fine place to share and share alike.

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: Cars 2 Cars 2 Cars 2 Cars 2 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!

How not to encourage your child's obsession

noreply@blogger.com (Ellen) — Thu, 02 May 2013 10:38:00 +0000

Say your child has an obsession, as kids sometimes do. Say it's a color, a form of transportation, a food, a car wash. Say it's the movie Cars 2, along with every single last bit of branded merchandise that goes with the movie. Not Cars (the original movie) but the sequel, Cars 2. Only Cars 2. Say you wish to avoid encouraging this obsession. Say you might be weary of said obsession. Say you wish the movie Cars 2 had never been created. Say you sometimes feel that if you have to discuss it one more time, you just might have a Cars 2 breakdown.

Well, my friends, here is exactly what NOT to do.

Do not let Daddy get into the habit of taking your child out to breakfast on Saturday mornings, followed by a jaunt to Target to purchase yet another Cars 2 product.

Do not decorate part of your basement with Cars 2 decals.

Do not crack up when you ask your child what he'd name a new baby, if you had one, and he says "Cars 2!"

Do not let the nice lady at school who sews bibs make ones for him with Cars 2 fabric.

Do not allow your child to turn down gifts from friends and family because the items had the Cars logo, not Cars 2.

Do not try to foster your child's musical side by purchasing Cars 2 instruments.

Do not nod knowingly when he repeatedly shows you that the difference between Lightning McQueen in Cars and Lightning McQueen in Cars 2 has something to do with the tires. WTF?

Do not make plans to visit Cars Land in California, and get into futile arguments with your child when he insists you are going to Cars 2 Land.

Do not fill his underwear drawer with Disney Pixar Cars 2 Briefs that you order in bulk from Kohl's.

Do not let him repeatedly print out images of Cars 2 characters to hang on his wall/door/any blank patch of space, especially because it might cause your other child to screech "MOMMMMY, he is using up ALL MY PRINTER INK!"

Definitely do not let him see the Cars 2 clock available only on a British site, the purchase of which will run you $40 plus approximately 10 million dollars in shipping costs.

Do not let him traipse around clutching a Cars 2 DVD wherever you go—the doctor's office, zoo, restaurant. Although, hmmm, it is nice to see him grasping it so well.

Do not let him go the library where, although you find all these awesome books on cars and trains and trucks, he will spot Cars 2: The Essential Guide and decide that is the only book he wants.

Do not let him repeatedly play the DVD his music therapist made for him of various Cars 2 items, complete with the Cars 2 soundtrack.

Do not allow him to wear Cars 2 pajama tops in public.

Do not smirk when his sister teases him by shouting "MAX HATES CARS 2! MAX HATES CARS 2!"

Do not repeatedly take him to Party City and let him buy Cars 2 plates, Cars 2 cups and Cars 2 napkins for his Cars 2 birthday party, especially if 1) It's not happening for another seven months and 2) You are not planning to have 2000 people over.

Do not buy him Cars 2 tissues, either.

Do not offer to let him type his first Facebook status, knowing full well that he is going to post (wait for it) "Max liks Cars2"

Do not, at bedtime, grudgingly sit down at your computer with him on your lap, type "Cars 2" into the search bar and scroll down page after page of Cars 2 merchandise.

You've been warned. And you've just gotta trust me on this one.

How did you tell friends and family your child had special needs?

noreply@blogger.com (Ellen) — Wed, 01 May 2013 10:40:00 +0000

"Just three weeks ago, I found out that our two-months-old boy has a genetic mutation," the email said. "I am still at a grieving phase and didn't tell my friends or my many family members about the baby's situation yet. I wonder how you broke this news to your friends and family? I find it extremely difficult since my emotions are complicated. And I tend to isolate myself. Any insights or advice?"

I knew what this mom was feeling, because I wrestled with it right after Max was born. I had a nice email birth announcement all prepared, the addresses entered—all I had to do was fill in the date, name, height and weight. Then Max had seizures, and doctors discovered he'd had a stroke. It took me at least a day to let my parents and sister know. I don't remember exactly what I said, but I was straight up: "Max had a stroke.... Yes, babies can have strokes.... We don't yet know." I said the same to a few close friends.

I spared my family the possibilities doctors had warned us about—that Max might never walk or talk, that he could be cognitively impaired and have vision and hearing issues. I wanted to ease them into this. They'd been so excited for Max's arrival and I couldn't bear for them to be devastated.

I wasn't quite sure what to say to other people. It was difficult to think straight; I was reeling from the shock and sadness. The message I finally sent out: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."

Looking back, keeping things general at first was the best thing, for us. Dave and I were ourselves floundering for answers and struggling to not drown in grief. It would have been too much to share more. Over time, we'd have more detailed conversations with friends and family about risks, concerns and fears. And over time, as Max grew and flourished, the grief would recede—replaced with real optimism and hope, and the joy that he brought us.

How did you tell friends and family your child had special needs?

A guy with Down syndrome becomes a web victim, and his parents sue

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

How horrified would you be if your child's photo spread around the web with a derogatory caption?

How horrified would you be if your child had Down syndrome and the caption was a slur against people with special needs?

It's happened, and you don't need to be those parents to feel their horror. Now, they're suing in what's said to be the first case of its kind.

It's about time some haters got their due.

Pamela and Bernard Holland are parents to Adam, who has DS; they live in Nashville. At 17, Adam took an art workshop in which he made a sketch that read "Go Titans One." A photo of him holding it went online (you can see it here). And then, it got swiped and people started writing nasty captions. It ended up on the website of Sarasota, Florida radio station WHPT-FM, with the sign Adam holding Photoshopped to read "Retarded News."

"Retarded News" is a segment on The Cowhead Show, one of the radio station's programs. It's designed, court papers say, "to highlight odd stories that are seemingly always in the news. These stories are NOT about disabled individuals."

That may be true, but a radio segment labeled "Retarded News" is offensive to anyone with intellectual disability—it's equating them with weird, stupid stuff. (If you are new here and don't totally get why the word "retard" demeans, read this.) The Cowhead Show still has a YouTube video up called "Retarded News Theater" with a voiceover by a man speaking in a slow, slurred voice. You'd have to be a pretty pathetic human being to find that amusing.

The Hollands are suing the parent company of the radio station, Cox Media Group, along with the Sign Generator website and a Flickr user for featuring images of their son with derogatory captions. Sadly, I've seen photos of Adam online with these captions; I never knew who he was until now. I've seen it happen to other children and young adults with Down syndrome, too. You might recall that something similar happened to Heidi Crowter, a young woman with Down syndrome. A photo of her as a child was stolen online and, for years, used in a nasty photo meme, often with the words "I can count to potato." Heidi's mother put up a Facebook page begging sites to take down the photo.

The Hollands' lawsuit won't stop the slurs, of course. Perhaps the case will establish legal precedents, however, for misappropriating images online. Meanwhile, these parents are sending a message: You can't make people with special needs the victims of defamation and cruelty online without consequences, legal or moral. And they're raising more awareness about an awful word that's no joke if you are a person who's intellectually disabled, or you love someone who is.

Image: Flickr/Hryck.

Really fun therapy for kids with special needs: It's called "pinball"

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

I haven't yet been to a therapy center that offers pinball therapy. Max's occupational therapists have yet to recommend it, though I feel certain they would endorse it. Insurance surely would not pay for it. But it's awesome, and a good reminder that therapy comes in all shapes and forms.

We'd road tripped to Asbury Park, NJ, our first time down at the shore since Sandy; the boardwalk reopened just last month. Wandering around we came upon the Silverball Museum Arcade, home to 150-plus pinball machines, some of which date back to the 1930s. We paid a flat fee to hang out for an hour.

We found Max a tall chair to sit on, and he played using both hands—always a big deal, since he tends to mostly want to use his left hand, the stronger one. Dave helped him out.

When Max was a tot, the thing that used to most stress me out—well, other than the what-will-he-be-like stress—was whether I was doing enough therapy for him. I never felt like I was, especially because each of his therapists (the occupational therapist, the physical therapist, the speech therapist, the vision therapist) gave me exercises I could do with him.

There was no possible way I could have done all of them, unless I performed therapy on Max while he slept, but that didn't stop me from freaking out. I so badly wanted Max to walk, to babble, to be able to grasp toys and spoons. I felt like not doing all of the exercises was impeding his progress. Then I'd despair that I just wanted to enjoy my child and I wouldn't do any exercises all weekend long. It was a vicious cycle.

Some things were a natural part of our days, which of course is the best kind of therapy there is. I'd bicycle Max's legs and massage them while he was on the changing table. I'd stretch out his arms when I dressed him or when I got him to do "How big is Max? SO big!" In the bath, I'd massage his face and jaw with a washcloth to loosen him up. We'd crash toy cars as I helped him grasp.

I always wanted therapy to be fun for Max, and the best therapists knew how to make it so. I learned to ask them to refrain from saying it was "time to work." I figured Max had a lifetime of therapy ahead of him, and I didn't want him to consider it work. But, yes, there were exercises that were just...exercises. And there were times when getting Max to play with toys was exhausting.

Max has come a long, long way. Therapy has most definitely helped, as has Max's determination and good old luck. There are still plenty of therapy to-dos (massaging his feet and arms, practicing walking downstairs and grasping pencils and articulating consonants), and that's the way life is. Max is more into playing games, which helps; one super-creative OT recently came up with"Word Twister. She taped words over the circles on the mat and when she says one, Max has to bend down to it and stay in that pose.

Max is also more open to experiences and places that flex his muscles and brain power. At the zoo, we name animals and mimic sounds they make, get a good sensory experience in the petting area, stretch his legs and core on a pony ride. On an errand at Target, Max can push around a shopping cart with both hands, place items in there, help figure out the right amount of money to give the cashier. Playing T-ball, going to a museum or the playground, holding an ice-cream cone, dance party at our house—check, check, check, check.

Just his concentration alone at the pinball arcade was an amazing feat, this despite the pling-pling-plings of the many machines and kids running around.

Bowling therapy was also excellent.

And Sabrina got to meet Elvis.

I still get flashes of I'm-not-doing-enough guilt; it comes with the job of being a special needs parent. There are still exercises that I dread, like getting Max to bite on a small rubber tube to loosen up his jaw before he eats so he can more easily chew. I do it as often as I can. Sometimes, I slack. Sometimes, Max refuses and I let it slide.

I do what I can.

But pinball therapy? Ah, there's a therapy we can all embrace.

Special Needs Blogger Weekend Link-Up: Post it!

noreply@blogger.com (Ellen) — Fri, 26 Apr 2013 10:40:00 +0000

Welcome to another Special Needs Blogger Weekend Link-Up, the next best thing to having a publicist.

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'm Sexy And I Know It.

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!

Free bikes and bike lessons for kids with special needs

noreply@blogger.com (Ellen) — Thu, 25 Apr 2013 10:42:00 +0000

AN AMAZING BIKE GIVEAWAY FOR KIDS WITH SPECIAL NEEDS

For the second year in a row, the Friendship Circle is hosting a Great Bike Giveaway for kids with special needs, and they've partnered with major adaptive bike companies. You choose which of the five bikes you'd like to enter to win for your child, from now through May 12, then get 50 friends and family members to nominate you. Five runner-ups will each receive a $500 Gift Registry from Tadpole Adaptive towards an adaptive bike. Awesome-ness!

BIKE LESSONS FOR KIDS WITH SPECIAL NEEDS

iCan Bike programs (formerly known as Lose The Training Wheels) are geared toward helping people with disabilities ages 8 and up learn to ride a two-wheeler. Kids can do bike camps, after-school programs and in-school programs around the U.S.

And in case you don't win a bike...
PROGRAMS THAT PROVIDE ADAPTIVE BIKES TO KIDS WITH SPECIAL NEEDS

National

Variety Kids on the Go! funds durable medical equipment for kids with physical challenges and financial need, including bikes along with wheelchairs, walkers, van lifts, house ramps, adaptive car seats and strollers. You apply through your local chapter of Variety The Children's Charity.

Athletes Helping Athletes has provided handcycles to more than 625 children with special needs since 2000; you can apply here.

By state

Connecticut

The Freedom Program provides bikes to kids with special needs—145 to date!

Florida

Project Ride, through the Jewish Community Center in Boca Raton, Florida, gives new, modified adaptive bikes to kids ages 6 to 17.

Idaho

Bike For Kids is an Idaho fundraiser whose proceeds go toward providing adaptive bikes to kids with special needs; contact info for applying for a bike is here.

Michigan

On Bike Day at Beaumont Children's Hospital in Michigan, 50 kids with special needs get custom-adapted bikes.

Pennsylvania

The My Bike program by Variety the Children's Charity provides adaptive bikes to children with disabilities who live in the Southwest, Pennsylvania region.

GOOD ADAPTIVE BIKES FOR KIDS WITH SPECIAL NEEDS

For an outstanding list, see 20 Bikes, Trikes and Tandems For Children With Special Needs.

Grief, life, love, hope, healing, special powers, blessings, rainbows and gratitude

noreply@blogger.com (Ellen) — Wed, 24 Apr 2013 10:39:00 +0000

Grief

A visitation for family and friends and funeral mass for Gavin took place yesterday morning at the church were he was baptized and Kate and Ed got married. Gavin: age 5 1/2, a kid with a saintly smile who'd just started walking and had beaten many odds. Kate: a beautiful person and stellar mom contending with the unimaginable.

I stood in the church's lobby and pored over the many keepsakes and photo boards set out on tables, Kate's labor of love. Gavin giggling, playing in water, doing therapy, loving his family, looking so handsome, being a kid. His birth announcement. The paper Valentine's heart he made. I tried to compose myself, went into the chapel, stood on the receiving line, gave Ed a hug hello, hugged Kate, hugged her some more, sat down in an empty row, wept.

Life

I spotted Miss Sara, Gavin's amazing aide, and Gavin's little brother and walked over. After Sara and I hugged, I stooped down to chat with Brian who was munching on organic bunny fruit snacks. We got to talking about his love for Angry Birds Star Wars, which I hadn't even known was A Thing. "Have you seen the Stars Wars movies yet, or are you too little?" I asked. "No, I'm too big!" he told me. I laughed. We high-fived. He gave me the empty bunny snack wrapper.

Love, hope, healing

Kate wrote an absolutely beautiful eulogy and read it with quiet strength, barely faltering. She acknowledged the sadness in the room, then said, "Ed and I feel strongly that we want people to leave here feeling mostly inspired....by Gavin and his journey. If we've ever been sure of anything, it is this: Gavin was sent here on this Earth to work through us to inspire others. To change people. To open people's hearts to endless possibilities. To inspire hope and healing."

Kate noted that she was aware that many people have been inspired to do wonderful acts to honor Gavin. "If people all over the world are feeling even a fraction of what we have felt over these 5 1/2 years as Gavin's Mommy and Daddy—inspired, lucky, blessed, hopeful—then my heart is full," she said. "Gavin is continuing to change people. Help people. Heal people's hearts...including ours."

Special powers

Miss Sara read a favorite book of Kate and Gavin's, On The Night You Were Born.

Gavin, on the night you were born,

the moon smiled with such wonder

that the stars peeked in to see you

and the night wind whispered

"Life will never be the same."

Because there had never been anyone like you...

ever in the world.

•••••

For never before in story or rhyme

(not even once upon a time)

has the world ever known a you, my friend,

and it never will, not ever again.

Blessings

Ed wrote a homily, Prayers of the Faithful.

He asked that God provide people suffering injustice and tragic events, like those recently in Boston, with mercy and comfort.

He asked that God bless the teachers and therapists who care for and nurture our children.

He asked that God give hope to those who have recently lost a loved one or who are praying for organ donations for loved ones.

And he asked,

For all our children, that our love for them may keep the safe throughout their life on earth, and that God grant them eternal peace and happiness when they are with Him.

Rainbows

"People are fascinated with rainbows," said Father Kelly. He spoke of the first mention of rainbows in the bible, in Genesis:9. He spoke of classical composer Frédéric Chopin and his Fantaisie-Impromptu, part of whose melody is in the song "I'm Always Chasing Rainbows." He spoke of Judy Garland singing about rainbows. And he spoke of Kate's blog, Chasing Rainbows, and how she's shared so much there, and inspired so many.

Gratitude

Every one of Gavin's therapists and teachers, from birth on, came to the service, except for a nurse who was with a family in need. One of Gavin's former aides even flew in from Turkey. They participated in the Presentation of Gifts. One by one, each walked up to the podium and placed a stem of blue hydrangea in a clear glass vase. A sign below read "A superhero sleeps here."

Life

The final song of the service was You Are Mine, by David Haas. The last lines rang in my ears the whole drive home:

I am the word that leads all to freedom

I am the peace the world cannot give

I will call your name, embracing all your pain

Stand up, now, walk and live.

Hope

More words from Kate's eulogy that I will never forget: "Never let anyone tell you that you can't chase rainbows," she said. "As I look out on this sea of faces, I know that each of you have been inspired by Gavin's story. Gavin, really, was everyone's child and I was happy to share him with all of you. But you can find hope and inspiration and important life lessons in your own lives. In your children's lives, young or old. In your journeys, even when the path seems impossible to walk, like this one for us. Everything is an opportunity to learn... to help others... to grow. Gavin taught me that. I am just the messenger today."

Remembering Gavin, today and forever

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

This morning, I'm driving to Pennsylvania for a memorial service and funeral for Gavin. I know many of you wanted to be there, and I will give Kate an extra hug for you. I've never been to anything like this so I'm not sure what to expect, other than that Kate put together beautiful photo boards of Gavin.

Kate being Kate, she wrote a post reassuring people who are attending that she realizes they might not know what to say, and said that is OK. She also gave us permission for not worrying about holding it together, which I was grateful to read because I do not think I'll be able to. I just don't want to sob in front of her, or do anything to add to her grief.

I've been thinking and thinking about what to wear. I'm not a person who devotes much brain power to outfits, but all black doesn't seem right for a child's funeral. I don't want to look morbid, for Kate's sake. So I'm mixing black and white. Kate also asked that people not wear perfume, cologne or anything scented as they used to trigger skin flare-ups for Gavin; she thought that a whiff could make memories come flooding back of protecting Gavin. So I'm borrowing Dave's unscented deodorant. I'm a big ball of nerves, sadness and pain for Kate.

I desperately wanted to bring something. Last week I got in touch with Melanie, Daniel's mom, from Better Than Normal. Melanie makes the most amazing crowns and capes for kids at her online shop Let 'em Be Little. I thought of Superhero Gavin's effect on people, and asked her to make him this Super G.

Kate's requested that donations in lieu of flowers be made to the following non-profits:

The Child Life Program at Nemours/Alfred I duPont Hospital for Children. If you did not read Kate's post about how it helped her younger son, check it out, and see the specifics of where to donate.

Gift of Life Family House, which provides support programs and temporary lodging for organ transplant patients and their families.

CaringBridge, a free site for people to create personal pages where they can update friends and family on health issues. Kate originally started writing about Gavin there.

So many people have honored Kate's birthday wish to do someone good; today would be a great day to fulfill that wish, then share it on her Facebook page.

A great new way to describe kids with special needs

noreply@blogger.com (Ellen) — Mon, 22 Apr 2013 10:35:00 +0000

Saturday, Max and I raided the library for books about cars, took a walk in the park and had lunch at his favorite Italian place. The meal morphed into something truly amazing.

Max got ziti with butter, every last inch covered in ketchup, and after a brief stand-off in which he tried to get me to feed him (I refused, unlike some other parents I know named Dave) he chowed down with gusto. "Hi, Ellen!" I heard. I looked up; a nice woman I know from around town had sat down at the next table with her son. A. is 12, and has never met Max. We all talked as Max concentrated on eating; he stopped chewing only to say "I'm Max!"

When Max finished, he told me a few things, including that he wanted to go check out the train station afterward.

"Why's he mumbling like that?" A. asked.

I do not mind questions like these, not at all, especially because fielding them is far better than noticing the kids who just blatantly stare at Max, as a couple did when we walked into the restaurant.

"He has cerebral palsy," I explained, "and that means your muscles don't always do what your brain wants them to do. Your tongue is a major muscle, so he has issues with moving it and that's why his speech sounds like that."

A. paused. "Ohhhhh," he said. "He has rebel muscles!"

I smiled. "That is the best description of cerebral palsy I have ever heard!" I told him.

Max hadn't been listening, so I filled him in. "Max, I told him you have cerebral palsy," I said, "and he said you have rebel muscles!"

Max seemed to like that, too.

So often our kids' challenges are described in terms of impairment (disability, special needs), words that encompass their entire beings. But "rebel" makes it clear it's just a part of them that's acting up. It doesn't let their challenges define who they are.

A child with Down syndrome has a rebel chromosome.

A child with autism has rebel senses.

A child with a genetic condition has rebel genes.

A child with hearing issues has rebel ears.

A child with vision issues has rebel eyes.

A child with developmental delays has rebel timing.

Yeah.