Love That Max

Share your posts about the r-word—a linkup

noreply@blogger.com (Ellen) — Sat, 10 Mar 2012 12:00:00 +0000

Spread The Word To End The Word Day was Wednesday, and a whole lot of people wrote a whole lot of powerful posts about the word "retard." Please share them here so we can spread the word even more. Feel free to post ones from previous years, too.

Where it says "Your name" put the title of your post, and where it says "Your URL" for the link put the direct URL to your post. Done!

Haters gonna hate, and this blogger's gonna pity

noreply@blogger.com (Ellen) — Fri, 09 Mar 2012 01:55:00 +0000

If you blog, you know that putting yourself out there means you open yourself to offensive comments. As with many things in life, you can't control people—but you can control your reaction.

An article on CNN.com about the campaign against the word "retard," which featured my video, ended up on the homepage. It triggered an avalanche of arguments, anger, ignorance and hate. Comment sections on news sites tend to bring out the worst in people. You wonder why some people have so much time to sling nasty around—as if it's their jobs or something. YouTube also had some doozies.

It was like driving by an accident on a road: At first, I couldn't tear my eyes away. I knew I needed to stop reading the comments and eventually I did. But then I lay awake in bed last night, thinking about some of them and raging. And this is what I decided: I am going to pity these people. And suddenly, I was calmer. (Although when a Facebook friend called them "completely heartless, ignorant asshats," it didn't suck.)

And so...

I'm going to pity the people who said "This article is retarded!" because they are wholly lacking empathy, a handy human trait. There's no app for that.

I'm going to pity the people who said "Your child is a retard" because they are cruel, and when you're cruel it comes from a very unhappy place.

I'm going to pity the person who wrote "retardation and other developmental disabilities are a burden to our health care system and our educational system" because he was born without a soul—a major disability, if you ask me.

I'm going to pity the person who said my son will never be considered an "equal" in society because that dude is closed-minded, and will miss out on much in this world.

I'm going to pity the person who wrote, "PLEASE don't take away the word retarded, it's a great word! It's one of the funniest words in the dictionary" because there's also no app for curing stupidity. As one commenter noted, "Very often the word is used by those lacking much capacity themselves."

I'm going to pity the teen girl who felt the need to note that other species kill their disabled when they are young, because it is sad that she has such hate inside her. (As my wise friend Alice of Finslippy noted, "Some species also eat their own poop.")

I'm going to pity the person who said "Maybe if you weren't smoking crack Max wouldn't have been a retard" because it is dubious he ever had a mother.

I'm going to pity all of 'em because they'll never be as happy, open-minded, caring or loving as Max already is.

Would you call my child a retard?

noreply@blogger.com (Ellen) — Wed, 07 Mar 2012 11:50:00 +0000

"I use the word retard every day."

"A campaign against a word is retarded."

"Thicken up ur skin and stop taking this stuff so seriously!"

"Being called a retard is a common insult that is usually deserved by the recipient."

"To speak out against the use of just one word, simply because it's personal to you, is unacceptable."

These are some of the recent comments I've gotten on posts about how demeaning the word "retard" is. Last year, when I did that Twitter project where I tweeted at people who used the word retard, I got responses that were even more lovely.

Today is Spread The Word To End The Word Day, part of an ongoing campaign against the r-word created by The Special Olympics. As I write this, close to 250,000 people have signed a pledge against the word "retard." A kajillion more don't get what's so wrong. And so, I made this video.

Most people would never call a kid with cognitive disabilities a "retard" to his face (and if you are a person who would do that, step away from this blog and go search for your soul). If you wouldn't say the word to my child because you know it's offensive, you should avoid using it elsewhere, too. Either way, it's demeaning. Either way, it hurts my child.

Feel free to post the video on your blog, tweet it, Facebook it, beam it up to alternative life forms. It would mean a lot to me. No matter what, thanks for taking a look.

Ultimately, this isn't just about a word—it's about respect. It's about getting people to consider kids and adults with cognitive impairment equal members of society. It's not about censorship, either; it's about starting a conversation on how people can better treat Max and others like him.

Max has enough challenges to overcome in life without being haunted by ghosts of stereotypes past. As his mom, I want to give him every possible advantage. If asking people to not use a word could help my son in some way, you bet I'm going to ask.

Video created at Animoto

Myths and realities about financial planning for kids with special needs

noreply@blogger.com (Ellen) — Tue, 06 Mar 2012 12:00:00 +0000

Planning for the financial future of kids with special needs can be really overwhelming, not to mention perplexing. I don't know about you but financial anything is not one of my strengths, let alone the kind that involves making sure Max is taken care of as an adult. One word: eeep.

I'm glad to be working with Massachusetts Mutual Life Insurance Company (MassMutual) on a series of sponsored posts about planning, for my sake and yours. The following super-helpful (and very reassuring!) info is from Sal Salvo, a financial pro with MassMutual who is a SpecialCare planner. Experts in the program get advanced training on estate and tax planning, and also learn how to help parents and family cope with the emotional side of planning.

Sal has an adult daughter with Rett's Syndrome; he got involved in planning soon after she was diagnosed. "At the time, I did it for selfish reasons, so I could better know what I could do for my daughter," he says. "The emotional impact of having a child with special needs can be rough—it takes you out of the logic of planning." Here, he shares common misconceptions parents have about special needs planning, and some key reality checks.

The misconception: "I can just put money away into a special savings account for my child, maybe other family members will help out."

The reality: "If a child has more than $2000 in savings in their name, you will forfeit benefits that child is entitled to once they turn 21. They won't qualify for Medicaid, the program that entitles people with disabilities to housing, transportation, day programs, aides and medical care. Every state has different programs and services, but it's a maze you have to get through. Still, you do not want to have any savings in a child's name—that's why you set up what's called a special needs trust. You become a 'trustee' who can supplement care for a special needs child and make sure the child has a good life, without forfeiting government benefits. For example, a client came in who had a niece in Texas, and he'd left a large amount of money to her. I asked him why he'd selected her and he said, 'She's got autism.' Turns out he hadn't told his brother he had done this—and it could have messed up her benefits. We set up a special needs trust."

The misconception: "I can't afford to do special needs planning."

The reality: "Not all financial services professionals charge fees. And for those who do, fees can vary by region; in more expensive urban areas, such as New York, financial planning fees can start at $2000. That said, money shouldn't be a roadblock to preventing you from meeting with an expert—there's always someone who will be willing to work with you. Some professionals who charge fees may negotiate their price based on family need, for example. Many planners do a complimentary meeting first to lay out costs, and hear what your concerns might be. Just realize that anyone who does special needs planning has to have a predisposition to helping people."

The misconception: "If I already have a will and special needs trust, we're good."

The reality: "Parents get so focused on caring for their special needs child, they forget about themselves. But you must have money for your retirement. It's like that old parable of how when you're on a plane and the flight attendants go through safety procedures, they tell you to first put the oxygen mask on yourself in case of an emergency, then on your child. It's the same with planning for your retirement when you have a kid with special needs. You need to think about planning for two generations, you and your child. Problem is, when you get a diagnosis, you can be in denial. It can take a long time to come to grips to fact that child won't be 'typical,' a tough pill to swallow—for me, it was. When it comes to general planning for your financial future, time is your friend. Start early and it won't be overwhelming."

The misconception: "My child won't need long-term care."

The reality: "You just don't know, so it's best to plan for that scenario. You don't want to delay; when I was trying to get my daughter, then 18, into a residential program before she turned 21, it was a race against the clock. A lot of the places that would accept her were like glorified kennels. So many states have long, long wait lists for residential care and day programs. If you haven't provided for your child and they need care, they could wind up in an inferior facility. If you have a trust, however, you can supplement Medicaid—and also come up with alternate options, like pooling money with other families to purchase a house for your adult kids and hiring aides. And if your child doesn't need that care? If the trust is written properly, the money can be used for big-ticket items like college and buying a house."

The misconception: "I just can't deal with special needs planning right now, I've got too much else to worry about."

The reality: "Having an experienced financial services professional help you plan for the future will give you peace of mind—not only in finances but in other areas, too. We tend to know about great resources in the area, like support groups. I wish I had someone helping me in the early stages—I was like a ping-pong ball, between the emotional ups and downs, the stress of figuring out what was wrong, getting the necessary help and dealing with physicians and educational processes. But you don't necessarily have to be the one in charge here. Moms are often the ones who end up having to keep things together. Get your husbands involved."

This is one of a series of posts sponsored by MassMutual, for which I received compensation. SpecialCare is an exclusive MassMutual program that provides access to information, specialists and financial products and services.

My dad lives on every day

noreply@blogger.com (Ellen) — Mon, 05 Mar 2012 11:45:00 +0000

Tomorrow, it'll be a year since my dad died. I think of him every day, but not in a sad way anymore. I think of him when I honor the way he lived.

First thing in the morning, and throughout the day, I walk by his old phone. Dad kept this one till the end. I have this little ritual of pausing for a minute by the phone, before the insanity of the day begins, and thinking about what I can do to make it a good day.

In the morning, we all sprinkle chia seeds into our yogurt and oatmeal. My dad was into health food even before it became trendy. He was the one who first told me about flax seeds, and now chia seeds are the new flax seeds. He'd be so psyched we're eating them. (And when I down something evil, like Fettucine Alfredo, I get a bad case of dad guilt).

Dad's old Singer sewing machine. Dad would have been thrilled if I took up sewing, but that's not gonna happen. It does make a great spot for photos of the kids and a wedding shot.

On weekends, we listen to the news on Dad's Westinghouse (I had it fixed up). My father was a newshound who read several newspapers a day and always had the news playing on the radio. I miss him telling me about stuff and getting newspaper clippings in the mail, but he's still keeping me in the know.

I stashed one of his pipes (he had quite the collection) in our kitchen pile o' stuff.

My dad was into photography. I don't have time to make it a hobby, like he did. Every so often, though, I take a good photo and I think, Dad would have been proud.

Helping other parents teach their kids about ours

noreply@blogger.com (Ellen) — Fri, 02 Mar 2012 11:45:00 +0000

Nowhere in my mom job description does it list "Educate other parents." But sure enough, that's become part of what I do as the parent of a kid with special needs. It hasn't always come easy, and over the years I've gotten better at it. Not a master, but better.

Still, I'm always curious to hear how other parents handle this. So I asked some of my favorite bloggers and advocates, including Holly Robinson Peete, what they wished other parents would teach their kids about children with special needs. The answers are over on my Babble blog; please take a look, and share it with parents. And of course, feel free to add your own thoughts on what you want parents to help their kids understand about our kids.

Kids and adults with special needs who give you hope

noreply@blogger.com (Ellen) — Thu, 01 Mar 2012 11:53:00 +0000

Back after Max was born, I spent a lot of time emailing moms on The Pediatric Stroke Network e-loop. I was especially interested in connecting with ones whose kids were older six and up. Hearing that their children were walking, talking and generally doing OK gave me the hope I was hungry for. The doctors hadn't given us much to go on.

Now when one of you tells me how much Max gives you hope, it thrills me—because I know how you feel, because I am glad Max gives you comfort, and because I am grateful that he is doing as well as he is.

I also look to older kids and adults for hope about Max's future. This week, inspiration struck three times: first with a post by Susan Senator about her son Nat, 22, who has autism and who just moved into a home, with staffers to assist him and his roommates. And then by this video I found about young adults with special needs who live together in a group of apartments in California.

And then, I was wowed by this video clip I found at Shannon's blog about three men with cerebral palsy who are doing great things. They're featured in a documentary-in-progress called The Cohesion Project.

I hope they inspire you, too.

What I Do: Kids with special needs

noreply@blogger.com (Ellen) — Wed, 29 Feb 2012 05:25:00 +0000

9 bits of bliss from the Blissdom 2012 conference

noreply@blogger.com (Ellen) — Tue, 28 Feb 2012 11:45:00 +0000

I was at the Blissdom 2012 blogger conference from Thursday till Sunday, being all blissed out and trying hard not to wonder if the kids were eating ice-cream for breakfast, lunch and dinner and wearing the same clothes for three days in a row. (They were and they did.)

Once again, the conference was at the planet known as Gaylord Opryland, in Nashville. I was a community leader for parenting/family/special needs, which meant I got to help people out and lead discussions and generally spread bliss. Blogger conferences, especially this one, typically have a mix of inspirational and informational sessions; often, they're both at once. A few choice tidbits I picked up:

• Be present. Motivational speaker Jon Acuff kicked off the conference; his new book is just out, Quitter: Closing The Gap Between Your Day Job & Your Dream Job. Jon spoke about the time his little girl placed a napkin over his iPhone as he was talking on it. On it she'd written "Daddy pay atenshon!" (As in, pay attention!) Some days, it's easy to get so sucked into work and chores that you forget what matters most: paying atenshon to your family. We all know it, but it's a good reminder to back away from the iPhone and Facebook. And if you have a serious problem tearing yourself away from tech stuff, a tool called LeechBlock will block time-sucky sites for you whenever you program it to. I for sure need to LeechBlock Pinterest.

• You can help end child hunger. ConAgra Foods has a campaign to help the 1 in 5 children in America who don't know where their next meal is coming from. They donated 40,000 meals during the conference. Meanwhile, when you buy foods from participating brands—including Healthy Choice, Hunt's, Orville Redenbacher, Chef Boyardee and Marie Callender's—and enter the code on the back of the product at Child Hunger Ends Here, you can donate one meal.

• Helpful writing tip: It pays to come up with the headline before you write a post; once you have the title nailed down, it can help you focus your post (props to Amy Graff from BabyCenter and The Mommy Files for a stellar presentation). Also, it's best to keep headlines to five to seven words (pay no attention to me).

• Need good music for your videos? At a session given by Diane Cu of White On Rice, a film and lifestyle photographer and filmmaker, she mentioned a few sites for finding free or low-cost music to accompany videos: With Etiquette, Triple Scoop Music, Free Play Music and Vimeo. Check out this beautiful video she and her partner, Todd, made:

Our Life Recipe - Todd, Diane & Sierra

• Word, if you take pictures of Joe Jonas performing, you will bliss out a lot of teen girls on Twitter. Yes, Joe Jonas performed at Blissdom. So did Rascal Flatts. And Chris Mann. And Nathan Pacheco. The music was stellar. And I really was thisclose to Joe.

The entertainment was generally spectacular. Saturday night at Girls Night In we saw a preview of an Oprah's Next Chapter episode, her new OWN TV show, in which she visits with Paula Deen. I've never watched Paula before. She makes some sinfully good food (I could practically feel my cholesterol levels rising as she prepared it) and the woman is a hoot. At one point, she and Oprah were oversharing about how they pee a bit when they laugh or cough. "What do you call that?" asks Gayle King. "Multitasking!" said Paula.

• Blogger conferences make your ovaries ache. But in a good way. The babies. Oh, the babies!

My Blissdom crush: Dylan, whose super-cool mom, Issa, blogs at LoveLiveGrow.

• Take time to tell friends you care. One of my favorite activities—no joke—is picking out cards for friends at stores. I'm usually doing eleventy zillion things at once but when I'm browsing birthday, new baby or wedding cards, it's a zen thing. I was psyched that the Hallmark peeps set up a Get Carded suite where you could send cards to friends at the conference. I think maybe they were a little astounded by how many I sent. As they say, life is a special occasion.

My friend Sara at Saving For Someday sent a message that gave me the warm fuzzies

• Swag sneaks rock. Famous Footwear handed out Dr. Scholl's Jamie sneakers to everyone there, and they may just be the comfiest sneaks I've ever worn. Sabrina was mad that I got a pair and she didn't. I think she should start a blog called "It's Not Fair!"

• There's no place like home. I love going to conferences—the mingling, the spirit, the learning, the parties, the hotel room to myself. By the time I was en route home, though, I couldn't wait to see the kids. I kissed them so much Sabrina informed me that my kisses for the day were "all done." But then when the kids were sleeping, I snuck in and kissed them some more.

Bliss.

What's blissed you out lately?

The iPad and Proloquo2Go: Max uses them at school, gets famous

noreply@blogger.com (Ellen) — Mon, 27 Feb 2012 11:50:00 +0000

We're big fans of the Proloquo2Go speech app in our home. So when the developer asked if I'd let him videotape Max at school using it, I immediately called the principal, along with Max's agent and publicist, of course. Here it is, soon to be a major motion picture! OK, maybe not. But it is rated "G" for "Good Stuff."

The speech therapist, Jen, is the one who first got Max to try an iPad. She's all sorts of amazing. Also of note: The part where Max leans over to the other girl's iPad to show her something. Max has been helping other kids at school figure out how to use their iPad and Proloquo2Go. Do you know how absolutely awesome that it is to me? Yes, I'm guessing you do. Max is a kid who needs a fair amount of assistance; that he's enabling other kids puts me on a high.

Word: I do think this app has given Max a voice he hasn't had before, as the title implies. I also think that it's encouraged him to articulate more words—he's getting more and more chatty. It's not always possible to know what he is saying, but it is very good to hear. I know parents wonder if a speech app will discourage their child from speaking; we've found the opposite to be true.

And, in case you are wondering, yes! We do own a brush in our home. Bedhead is very in these days.

This Is How I Do It: Lana of Along Came The Bird

noreply@blogger.com (Ellen) — Fri, 24 Feb 2012 11:45:00 +0000

This is another guest post in the This Is How I Do It series, which features awesome bloggers who have kids with special needs and their survival/sanity tricks.

Blogger: Lana Rush of Along Came The Bird

Her kids: Lily, 5, who has autism and sensory issues; Reagan, 15; and Ryley, 18.

My three biggest secrets to sanity are...

1. My faith. I truly believe that the Lord is what gets me through each and every day. You might have figured out by the ages of my daughters that Lily was a bit of a surprise for our family. God is the One who decided the Rush Family just wasn't complete without Lily Bird. So I believe that she is His kid and He's got an amazing and wonderful purpose for her life. And while I can't think of a better purpose than for God to just "heal" her outright, to open up her mouth and fill it with His words so that we can shout from the mountaintops what He has done for her, He hasn't seen fit to do that. Which only means that His plan for her is even better than that, even better than anything I can ask or imagine. And that keeps me going.

2. Family and friends. My in-laws live right down the road from us and are a wonderful source of help. Lily can be a handful but they're always willing to pitch in with anything from picking her up from school for me, having a "playroom" in their house that's pretty much "Lily-proof," and babysitting. My parents live in Virginia but have a condo here in Austin so they are frequent visitors. My mom is the first one to start in on all those pesky chores that need to be done around the house. And my dad is great for advice—both financial and "how-to," as in how to harass the health insurance company to get what we need for the Bird! He's also great at sending little supportive emails. I've got super friends that I can call anytime and they will literally drop whatever they're doing and come to my aid. I attend two monthly special needs support groups - one at my church for couples and another just for moms. These friends who can laugh and cry with me are an amazing source of encouragement, understanding, and refreshment. My husband, Ryan, is a pastor and our church family truly feels that Lily belongs to them as much as she does to us. They laugh with us, pray with us and feed us! Our church has a special needs ministry that provides one-on-one buddies for the kiddos so that the parents can attend the services. I would not be able to go to church if it weren't for these wonderful volunteers. It truly takes a village to raise a special needs child.

3. My blog and other blogs. I started my blog as a way to let extended family keep up with us. But I soon realized that writing five days a week was incredibly therapeutic for me. I decided I didn't really care if anyone ever read the blog, I needed to write. Then I discovered other blogs, my favorite ones being those written by fellow special needs parents. I started commenting on their posts. They started reading and commenting on mine. And before I knew it, I had all these connections all over the world. And it just became a natural part of my routine to make the rounds and check in with "my people." Several of these bloggers, I truly consider friends and hope to meet them one day in real life. Reading their blogs, keeping up with their families, relating to their joys and sorrows is a daily shot of encouragement.

How I keep track of my child's therapy and medical appointments:

My personal assistant. Oh, I jest. But how I wish it were true! Actually, I use the Yadahome app on my iPhone. I also use the TeuxDeux app for my daily to-do list. But I'm not going to lie... there's room for much improvement in this area of my life. It's not too uncommon for me to still be surprised by something sneaking up on me, like a doctor's appointment. I have found that no app or calendar works if you don't look at it every day. And honestly, some days, I really don't want to look at that calendar because pajama day is never on there!

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

...reading. It's about the only thing that truly makes me forget about life for a little while. Of course, that's assuming I'm reading something in which I am guaranteed to learn absolutely nothing. It's only a relaxing escape if I come out of it having done not one thing to improve my life. And not too much drama. I've got enough of that in real life, thank you very much. My favorite kind of book? Mystery, thriller, suspense. Give me a killer on the loose, a dead body or two, and a person in some type of law enforcement trying to solve the crime before others die and I am a happy woman.

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

...a nap. I'm not even kidding. Anytime I have a disappointing meeting or hear some unpleasant news or am asked to re-hash Lily's journey from birth to current, I'm fine in that moment. But afterward, I'm almost knocked to my knees by sheer exhaustion. My brain just starts to shut down, like a cell phone running out of charge. A quick nap just does something for me. I wake up feeling refreshed, more optimistic and ready to take on whatever needs to be done.

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

I'm going to be 100% honest here, folks: my answer is "school." I love my girl with all my heart but let me tell you, she is a handful and a half! She is smart as a whip, fast as lightning, and rarely still. Someone really has to have their eyes on her all day. LIly doesn't attend "real" school so I don't have to fight the IEP fight yet. Her day is made up of ABA, speech therapy, and occupational therapy in a clinic setting, along with natural environment training like you see in a typical pre-school setting—art, music, outside play, circle time, story time, etc... When I get her home in the afternoons, I don't sit down until she's in the bed and even then, I usually make several trips into her room! So yes, I'm glad for school so that I can get some things done around the house, run my errands, and watch a little mindless television while sitting on my fanny before she gets home. Also, a Route 44 Sonic Diet Dr. Pepper with a double shot of vanilla helps... for me, not the Bird!

The way my husband and I split up responsibilities for caring for our child is...

I tend to be the "doer" and he tends to be the "watcher." I get up and get breakfast made, meds distributed, lunch packed, and all of Lily's paraphernalia in her school bag. All this while Lily's lounging in the bed with her dad. Then I get her dressed and Ryan usually carries her to school. If I was super organized the night before, some of this school stuff is already done and we can all lounge in the bed together. Evenings are pretty much the same: I'm cooking supper while he's horse playing with Lily. He sticks her in the shower, I get out the pj's and get her room ready. We all try to lay on the bed for some "chill time" before we tuck her in. It might sound like I'm doing the bulk of the work, but honestly, keeping an eye on the Bird is the harder job! I couldn't do all that stuff if he wasn't with Lily.

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

By ignoring them, mostly. I guess I should be trying to educate people but if someone approaches me in the grocery store because Lily is having a meltdown and says something ugly or offers "helpful parenting advice", I pretty much think that they don't want to be educated and really, nothing I say is going to make them think my kid needs anything other than a good spanking. They have witnessed something and in sixty seconds, they have made a judgement about me and my family. Rude people are just rude and I don't have time to change them. Thankfully, I've never had anyone approach me like that. I'm much more patient with children who stare at Lily. At her age, they're mostly just curious and honestly don't know what to make of my kid. That I can handle. I'm happy to answer their questions because hopefully, they'll get a little education and not grow up to be rude! Now my husband has a different approach when adults keep staring. He stares right back at them, with this almost maniacal smile on his face. Think the movie "The Shining." Most people get very uncomfortable and look away. And really, if anyone complains about it, what are they going to say, "That man just keeps smiling at me!"

One great therapy technique I recently learned for my child from her therapist that I like doing is...

Massage. Lily is a kid who craves body pressure. She absolutely loves it when I lay on her, covering her whole body with mine. Or when I squeeze her in a good ol' bear hug. So massage is a good way to calm her down and create some body awareness. Now, it's not professional or anything like that. Usually, it's at night after a shower. She lays on her bed and I rub lotion on her legs and arms. She starts off squirmy and ends up finally laying still and relaxed. She gets that pressure she's craving and it's a nice way to end the day. If I could just get someone to prescribe a weekly massage for me, life would be great!

One great site I've found lots of good ideas on is...

...Pinterest. I'll know I'm echoing the masses here but there's just so much great stuff on there! If you want to follow me, I'm www.pinterest/lanalrush. I mostly use Pinterest to find fun things to do and good food to eat. If I'm looking for more medical type information, I go to NIDS, the website of Dr. Michael Goldberg (Lily's autism specialist) and head to the NIDS Yahoo group to talk with other parents of kids like Lily. I find other parents to be the most valuable source of information for me.

I rock because...

I have finally learned my limits and 98% of the time, I live within them. Just like the old saying goes, "If Mama ain't happy, ain't nobody happy," I know that if I get myself overbooked, too busy, and stressed out, the people who suffer the most are the very people I love the most. I want my family to get the absolute best I have to give, not the leftovers. They deserve it.

Our kids' obsessions: enter the labeling phase!

noreply@blogger.com (Ellen) — Thu, 23 Feb 2012 12:00:00 +0000

Like many kids, Max's little obsessions come and go. His spaghetti and car wash fascination? So one year ago. His thing for purple, however, shows no signs of letting up although lately he's been saying he likes purple with black. Progress!

Last week, a new phase started. I came home from work to find our babysitter sporting a white piece of paper on her chest with her name painted on it. "What's up with that?" I asked. "Max wanted to do it!" she said. Max had gotten her to write out the name of everyone near and dear to him on a big piece of paper, then they cut all the names out. Together they taped "Mommy" on my chair at the table and "Daddy" on Dave's chair at the table.

Later on, Max decided that he wanted to put "Sabrina" on her backpack. Her response, and I quote: "NOOOOOOOOOOOOOOO!"

"Sabrina, what's the big deal?" I asked.

"That's MY backpack!" she said.

"Honey, it'll still be your backpack, Max just feels like putting 'Sabrina' on it, so would you do that for him?" I asked.

"I'm NOT going to school with that on!" she said.

"No, of course not, we'll take it off later," I promised. And so she let him label her backpack.

This morning, as I was headed out the door to work, Max decided I needed "Mommy" on my chest.

"Max, I can't wear that to work!" I said.

"Eeeeyah!" he answered. ["Yeah!"]

I wasn't going to reason with him. So I left the house wearing "Mommy" on my chest, took the paper off and carefully placed it in my tote, then taped it on again when I walked back in the door at night. Perhaps I should have kept it on at the office, just to show them who's boss. That could work well at meetings, I think: "We're doing it because I'M THE MOM and I said so!"

My label would definitely come in handy should I have an identity crisis. Also, I am headed to the Blissdom blogger conference today and this could be a fabulous thing to wear instead of the name badges they hang out.

Meanwhile, I'm all for this phase. Unlike car washes, it won't cost us anything or require us to grovel with car wash attendants to let us go through a second time. Unlike spaghetti, I don't have to cook or ask waiters at restaurant to chop anything, stirring up all sorts of controversy in the process. I love that it's educational; Max is getting more and more curious about words and spelling.

Labeling stuff is also just plain fun, and I know it because I own one of those battery-operated label makers and I enjoy using it entirely too much. I keep it hidden in the back of a closet ever since Sabrina got her hands on it and mainly used it to print out labels that said "poopie."

What's your child obsessed with lately? Anything in your house need labeling? Because I know a kid who can help.

Better therapy sessions for kids with special needs: therapists share!

noreply@blogger.com (Ellen) — Wed, 22 Feb 2012 12:00:00 +0000

I recently asked a bunch of pediatric therapists how kids can get the maximum benefits from therapies: speech therapy, occupational therapy, physical therapy, ABA therapy, whatever therapy! All of these experts are contributing columnists to PediaStaff, and they didn't hold back on advice or honesty. Hope you find their words as helpful as I did!

From Melanie Potock, a pediatric speech language pathologist and feeding specialist in Longmont, Colorado who blogs at My Munch Bug

DO...
• ...Feel free to video our session to share with your partner, nanny or other caregivers.
• ...Call me if you have any sickness in your home that day. I see so many kids who are medically fragile and it’s helpful for me to know if I am about to enter Strep Throat Territory!
• ...Let me know if you feel you need to change to another therapist. Not every therapist’s style is the right fit for every child, or every family. Therapists understand that as a parent, you are just trying to do what you feel is best.
• ...Celebrate each and every step of progress with me! Therapists have the benefit of watching many, many kids make this journey over the years. We know each step on this path. It’s important for everyone to celebrate even the tiniest accomplishments and not become overly focused on the final destination. We will get there, one step at a time!

DON'T...
• ...Hesitate to tell me if you think something that I have suggested just isn’t working for your child or your family. I promise to listen, adjust the therapy and not take it personally.
• ...Clean up the house just because I am coming over to do therapy. I want my visits to the home to make your family’s life easier. Believe me, I’m used to seeing dirty dishes on the counter.
• ...Lose the therapy tools I loaned to you. I’m happy to loan them, but I can’t afford to replace them. And if your toddler accidently spilled grape juice on the book I loaned you on speech and language development, please let me know before I loan it out to another family.
• ...Be upset with me when I need to cancel at the last minute due to bad roads. As a therapist who drives from home to home and covers many miles in a day, road conditions vary and I often get caught in bad weather while it is still nice in your neck of the woods.
• ...Ask me to change your child’s diaper or take them to the potty, unless it is a part of your child’s therapy plan.

From Stacy M. Menz, a pediatric physical therapist in the greater San Francisco Bay area who blogs at Starfish Therapies

• Do encourage collaboration between your therapists and other team members (including caregivers). Often the other team members will be working on things that are easy for another therapist to carry over, which allows extra skill practice to be 'snuck' in. (An example: if a speech therapist is working on the child producing sounds such as m,b,p then a PT can have the child practice those sounds if they are playing with toys that have things like cows or sheep).
• Don't make exercises stuff you have to "fit into" your day—incorporate the exercises and 'homework' into your routine as much as possible so it is part of the day. Often your therapist will have ideas on how to do them; perhaps they can done when you change a child's clothes or diapers. Just be clear on what you can handle as a family so that your therapist can pass on the top priority for you to practice.
• Do give your child time to be a kid and have free time, or take a short therapy vacation. Letting them have time to play and interact with the world can often provide their bodies a valuable opportunity to practice, process and integrate all the new skills they are learning.

From Rona Silverstein, an occupational therapist in the northwest suburbs of Chicago

DO...
• ...Communicate with the therapist and participate in the sessions if appropriate.
• ...Ask questions of the therapist—we love to discuss and share our perspectives.
• ...Provide us with your perspective on what is going on. You are an expert as you know your child way more than we do.

DON'T...
• ...Forget the session is about your child. Keep the focus on him, offering encouragement and participating in problem solving.
• ...Ask questions at the end of the session. We may feel rushed and in a time pinch.
• ...Think we know all the answers. We don't! We do have a unique perspective though, so don't hesitate to ask us what we think.

From Becca Jarzynski, a pediatric speech-language pathologist in Eau Claire, Wisconsin who blogs at Child Talk

• Do ask questions! Sometimes we therapists get in our own heads and forget to explain things well. That’s our fault, not yours! Never feel like a question is to simple or to silly. It’s your right as a parent to understand what we are talking about. Make us slow down. Ask as many questions as you want and don’t stop asking until you have gotten the answers you deserve.
• Don't hold back on sharing with us. A good therapist will not only get to know your child, but you and your family as well. Tell us what you love to do each day. Tell us the struggles you face. Tell us the successes you’ve had. The more we know, the more we can help you integrate what is best for child development into what is best for your family.
• Do take our suggestions with a grain of salt. We are probably going to give you too much to do—we're therapists, it’s what we do. Although we have the best of intentions, sometimes we worry too much about the child and too little about the family. Give yourself permission to ignore us sometimes. Tell us if what we are asking you to do isn’t reasonable. Remember that no matter how important therapy is (and it is important), it must be balanced with maintaining a healthy family, full of love. Trust yourself to find that balance.

From Joleen R. Fernald, a pediatric speech-language pathologist in Dover, New Hampshire

DO...
• ...Be punctual to your appointments. I know you have so much going on in your life, but we have lots to get done in a short period of time!
• ...Tell me when homework is too much. I recall early in my career when I would remind families to read at least 30 minutes per day with their child. Then I had children of my own. I suggest 5 to 10 minutes now!
• ...Try out any exercises with me present so we can make sure you feel comfortable doing them.
• ...Understand that you, the parent, are far more knowledgeable about your child than I do; however, also understand that I am the expert in speech and language and together we make a wicked awesome team!

DON'T...
• ...Act as if you understand what I am explaining when you really do not. I don't mind explaining; please ask.
• ...Respond for your child. Let him work it out for himself so he can learn.
• ...Tell me you practiced your homework every day when in reality, you practiced on the way up the stairs to see me.
• ...Forget to update insurance information or paperwork. This can be very expensive for you and a pain in the neck for me. I'd rather spend my time working with you and your child than chasing down insurance reimbursement.

From Karen Head and Meghan Graham, speech-language pathologists, and Jill Perry, a pediatric occupational therapist; based in Boston, they're the founders of All 4 My Child, a site about collaborative tools and technologies

• Do explain your family culture and routines to your therapist.
• Don't feel that you need to be a therapist—"mom" is the most important role you play.
• Do share those special little moments of progress (or just adorableness) with your therapist. We treasure them.

Brain boosters for kids with special needs

noreply@blogger.com (Ellen) — Tue, 21 Feb 2012 01:40:00 +0000

Years ago, Max's pediatric neurologist told us to expose him to as many kinds of new experiences as possible. "It'll help grow his brain" is how he put it. In other words, getting Max to try different stuff would give his mind a workout, pique curiosity, encourage learning and focus and generally do his brain good. This is true of any child, of course, but especially true of a child with brain damage.

We got Max toys and books galore to explore. But for the longest time, he couldn't stand new places. They'd freak him out, to put it mildly. He'd screech, cry, shake his head as if we were torturing him (and by the looks we got from other parents, they for sure thought we were).

Max liked comfort places, the ones he'd been to again and again—mostly relatives' homes and Cold Stone Creamery (good for his belly, not so much his brain). And so, we got into the habit of repeatedly visiting local places that offered varied stimulation: zoos, children's museums and playspaces. We got memberships and season passes and we went and went and went.

Max has thrived. Because he's so comfortable at these places he's into everything, including new exhibits and activities. Today, we went to a zoo he loves and he didn't just walk in, he ran in.

We had our niece with us (Dave's sister had a baby girl on Saturday) and Max was thrilled to show her around and introduce her to "his" llamas and monkeys and lions.

Max's swan!

Everywhere we went, he was articulating the animals' names or imitating their sounds. His favorite animals are lions and zebras...

....though this time he was really taken by the turtles.

Meanwhile, my niece felt comfortable enough at the zoo to attempt a nap on a bridge atop the Pillow Pet she takes everywhere.

What's particularly great about going to these comfort places is the surge of confidence Max gets. After the zoo, we tried a new restaurant—not usually something Max likes, but he was all for it. Then we had ice-cream at a new place. And for the first time, Max asked to have his chocolate ice-cream in a cone.

It was a good day.

There are places I remember

noreply@blogger.com (Ellen) — Fri, 17 Feb 2012 11:50:00 +0000

We visited the pediatrician yesterday for the gazillionth time; Max was sick. (If only doctors' offices offered Frequent Fever Miles!) Turns out Max had strep throat, but you wouldn't have known it to look at him. He ran around the office like he owned the place, charming the nurses into finding purple stickers for him and letting him try a stetheocope and playing with various toys.

The waiting room has one of those wooden bead mazes. When Max was little, he wasn't able to manipulate the beads. He'd try so hard but the cerebral palsy had done a number on his fingers and he couldn't grasp any of them. I dreaded that waiting room because all the other kids would be flinging beads around that maze, but not Max. Now when we're there and Max pinches beads between his two fingers and zooms them around, I smile like a loon. It's one of those see-how-far-he's-come moments.

When you're a parent of a kid with special needs, you can have a very different perspective on the most mundane events, places and activities. So many of them are filled with memories, bad and good. The ghosts of the special needs past constantly meet the miracles of the present.

I walk past the home in our neighborhood where our babysitter would wait with six-month-old Max for me to come home from work and I'd break into a run when I saw them and bend down to look at Max in his stroller and he'd smile but he wasn't able to make eye contact because the stroke had impaired his vision development and I'd desperately say "Max! Max! MAX!" but he still wouldn't look at me and my heart would sink because I had a baby who couldn't even look his mother in the eye amongst his many other delays—and I am very grateful that he is able to see me now.

I go to the restaurant where Baby Max couldn't sit up in a highchair because his muscles were weak and Dave held him as I fed him—and I am very grateful for how strong Max's body has grown.

I drive past the hospital where Max stayed for three nights when, at 15 months old, he had a grand mal seizure so bad that the paramedics couldn't stop it and I rode to the hospital in the ambulance with Max violently shaking and finally a doctor at the hospital got it under control—and I am very grateful that the medication has kept the seizures at bay.

I walk past the building in town where Max went to Music Together and he'd sit in my lap as the other toddlers jumped and danced and ran around the room—and I am very grateful for how well Max walks now.

I clean the glass of a picture frame that hangs in our stairwell, the one with three-year-old Max in an argyle vest with his hair combed neatly to the side for which the sweet photographer at The Picture People told Max "Say cheese!" when he wasn't smiling and I said "He can't talk" and the tears welled up—and I am very grateful for the words Max has.

I grab coffee at the Starbucks where I was sitting with Max one morning when he was five and feeding him pieces of muffin and a woman at the next table leaned over and said, "I am an occupational therapist and I work with kids like him, does he have cerebral palsy?" and I said "Yes" and she told me how cute he was and then added, kindly, "I know it's easier to feed him but you should work on letting him do it himself" and I said "You're right, I will"—and I am very grateful that Max can now feed himself.

I notice the guy on the train who, nine years ago, bumped into me and spilled a little coffee on my coat as I commuted to work on my first day back after maternity leave and I glared at him and screeched "WATCH WHERE YOU'RE GOING!" because I was a total wreck of a woman and what I really wanted to screech to the world was "MY BABY HAD A STROKE AND I AM LEAVING HIM AND RETURNING TO WORK AS IF EVERYTHING IS OK BUT EVERYTHING IS THE OPPOSITE OF OK AND HE HAS BRAIN DAMAGE AND HE MAY NEVER WALK OR TALK"—and I am very grateful for how far I've come.

iPad giveaways for kids with special needs: here's another!

noreply@blogger.com (Ellen) — Thu, 16 Feb 2012 11:45:00 +0000

I've been wishing I could do more iPad giveaways for kids with special needs. And then, I got an email from a reader, Deborah, who lives in San Francisco and works for a non-profit. Deborah has an iPad she'd like to give to one of our kids. As she wrote, "My husband recently received an iPad as a Christmas bonus from his boss and so now we have two. I remember seeing several posts about an iPad giveaway gone awry and the many parents who commented how much they would appreciate one for their child—as well as posts about Max's iPad really opening up a whole new world for him. So we thought, why not give one of our iPads to a family who could actually benefit from having one, and would use it for something more useful than reading People magazine and playing Scrabble!"

So, I have Deborah's iPad to give away to a child with special needs who will benefit from it.

Here it is: It's the original iPad, 16GB with WiFi, model A12919, in silver. It's in great shape. As Deborah says, "It was purchased Christmas 2010 and hasn't left the house since it was purchased."

To enter this giveaway, please leave a comment about how your child with special needs could benefit from an iPad. You do not have to say a lot, but you do need to leave an email if one is not visible on your blog.

Please note, if you already entered the iPad giveaway I did in July, you can just write "I entered the July giveaway and would like to be entered here" BUT you have to use the same username as your original entry (and, again, make sure I have your email).

The winner will be asked to provide a letter of need from a speech therapist or doctor in their child's life. The letter from the therapist or doctor must include her qualifications and contact information so that he or she can be contacted to verify that, indeed, the recipient is a child in need of an iPad.

RULES OF ENTRY

• This giveaway is open until Thursday, March 1, 2012 at 11:59 ET.

• The giveaway is open to residents of the U.S. and Canada.

• Valid email address required, so I can reach you. If your email is not visible on your blog, you will need to leave it with your comment. If there is no email, your entry is disqualified.

• One entry per family, please.

• No entries accepted past the deadline.

WINNER DETERMINATION

• One winner will be chosen at random via random.org within 24 hours when the giveaway is closed, and I will email you to let you know you have won. This is not a merit-based giveaway; all kids who could benefit from iPads and speech apps deserve to have them.

• If I do not hear back from a winner within seven business days, another winner will be chosen.

• If a winner does not produce a letter from their child's speech therapist or doctor within two weeks of being informed of the win, another winner will be selected.

Good luck! I wish I had iPads to give away to each and every one of you.

UPDATE: The winner of the iPad, chosen via random.org, is Jen Wen. I hope to have at least one other iPad to give away this year; every one of your kids deserves one.

When your kids love the stuff you loved as a kid

noreply@blogger.com (Ellen) — Wed, 15 Feb 2012 11:45:00 +0000

Here's Max, watching Tom and Jerry for the first time and loving it. I got the biggest kick out of watching him, because I was remembering what a laugh riot I thought the show was when I was a kid.

It is really awesome seeing your kids enjoy stuff that you enjoyed as a kid. Like me back then, Max also adores spin art (we have the Crayola Color Twister), Play-Doh (purple only, of course), long baths, giggling, being pushed on the swing for ridiculously long periods of time and as much ice-cream as his belly can hold (although I liked vanilla and he is all chocolate, all the time). Like me back then, Sabrina is into dance class (I was ballet, she's hip-hop), tennis, reading, wearing boy clothes, writing stories, making jewelry from kits and eating anything and everything carbs. She just started loving the Ramona series by Beverly Cleary, my childhood fave.

I passed along my wanderlust gene to both kids, who love to go on planes and stay in hotel rooms. I also gave them the gene that makes you want to jump up and down like crazy on your bed when your mom asks you to go to sleep. I dunno, maybe that's ALL kids.

A few weeks ago, I was at Sabrina's gym and I saw a little girl gleefully do a cartwheel. I wished Max could experience the joys of doing cartwheels. And then I caught myself: I could never do a cartwheel as a kid. And it sure didn't stop me from having a great childhood.

What sort of things do your kids like that you also liked as a kid?

Conversation hearts for special needs parents: Happy Valentine's Day 2012!

noreply@blogger.com (Ellen) — Tue, 14 Feb 2012 12:20:00 +0000

XOXO, all! Check out Conversation Hearts For Special Needs Parents: The Video. You can email it to friends if you care enough to send the very best, or something like that.

Getting people to see the ability instead of the disability

noreply@blogger.com (Ellen) — Mon, 13 Feb 2012 11:40:00 +0000

"Wow, he can dance?"

That's a 10-year-old talking who stopped by the other day; she lives in our neighborhood and came over to say hi to the kids. I'd told her that Max was in the family room rocking out to "You Might Think I'm Crazy" from Cars 2, as he loves to do.

"Yes, he can dance and he's got moves!" I answered, and brought her in so she could see for herself (and Max could show off, which he did).

It's the sort of thing that happens regularly, a kid or adult truly surprised by Max's abilities or even his personality.

"Oh, wow, he can read words?"

"It's so cool he has a sense of humor!"

"That's great that he can tell you what he wants for lunch!"

At times, it's painfully clear just how low people's expectations are of Max—especially when it's from people who know him, less so from people who don't. Last night, I went to a book club meeting. It was my second time there, and I mentioned that Max has cerebral palsy. Another mom said she knew a kid with CP who had been involved in a bike training program and offered to get me info. I said yes, because I thought maybe the program had other sports training, and then I mentioned that Max had a bike he rides really well. "Oh! So he can already ride a bike! That's incredible!" she said, and I heard the amazement in her voice and I understood. Before I had a child with cerebral palsy, I didn't know about the wide range of abilities you can have with CP.

This is one of the toughest things about raising a child with special needs: Getting people to see our kids abilities and possibilities, rather than just seeing their challenges. There are many stereotypes, preconceived ideas and doubts to push past. People have their special needs goggles on, the ones that make them see only the special needs and not the kid.

My son has his challenges, but sometimes his greatest handicap is overcoming people's dubious perceptions of his abilities. It's as if he's disabled twice—first by his physical and cognitive disabilities and then, by the way people underestimate him. Max and I have much to prove to the world about his strengths, his talents and his general awesomeness.

This is one reason I have an over-the-top reaction when parents of kids with special needs refer to them as not "normal." Max and children like him have enough to overcome in this world. As parents, I think we should talk our kids up as best we can. That's not to say we shouldn't mourn or despair; we all do, it's part of the road we travel. But our kids deserve for us to be their best spokespeople—their spokesmoms and spokesdads, you could say. And so I am there to gush about Max's growing reading skills, his mastery of the iPad, his amazing memory and, oh yes, his dance moves. To help people see what he can do, rather than what he can't.

I do this because I'm his mom, of course, but also because Max deserves it. He's amazing not only because he is a kid who has beaten odds or surpassed expectations, but because he's got awesome abilities in his own right—just like any kid.

Looking at life from the bright side up... plus, happiness giveaway!

noreply@blogger.com (Ellen) — Fri, 10 Feb 2012 11:45:00 +0000

Ever have a coworker who was irrepressibly upbeat, cool, funny and totally real, no matter how hectic things got? Amy Spencer is one of those people. We worked together at Glamour.

See? Happy!

It wasn't really a surprise, then, to find out she'd written a book about happiness: Bright Side Up: 100 Ways To Be Happier Right Now, out this week. It's a super-interesting read, but you also get a whole lot of good, practical ideas out of it from Amy and the many women and experts she spoke with. One of the tips I particularly loved: Ask your 100-year-old self. If you're struggling to make a decision, imagine yourself as a wise old chick and ask that person what you should do. As Amy writes, "Your 100-year-old self will be gentle and kind, but will also be the voice of conviction, strength and fearlessness you might have forgotten you have inside you." (Note: Do not picture how you will look when you're 100, or you will not feel very happy.)

Because she's nice like that, Amy offered to do a guest post. Read on, then get a chance to win some happiness—as in, her book!

I’m not a parent, but I want to be. As it turns out, I have a genetic condition that’s made it difficult for me to have a healthy pregnancy. And while I can’t fix my issue, I’ve been doing all I can to up my odds over the past four years: I’ve been getting acupuncture, drinking a terrible-tasting tea and tonic a few times a day, and avoiding caffeine, dairy, cold food, gluten, and more.

At first, I was consumed and depressed by how unfair my situation felt. But thinking about the bad stuff was only making me feel, well, bad. So I started looking for something positive I could focus on. The new diet—when I have the strength to stick to it—makes me feel lighter, healthier and stronger. And while I don’t love laying on a table with needles sticking out of me, it’s like a forced spell of stillness and rest in an otherwise busy day. And of course there’s the hope: that all this effort won’t be for naught.

It’s easy for people to feel bogged down by life’s bad moments. And there are plenty of ‘em. But there are also bright parts of every day, and those are important to note, too. Because happiness isn’t necessarily what’s happening to us, but how we see and feel about what’s happening to us. How we look at our situation can make a big difference in how we feel about it.

When my friend Betsy's son Tom was a baby and not meeting any developmental milestones, she said she isolated herself from the mommy crowd. “I couldn't deal with people talking about their kids’ advancements and playgroups because I wasn't having the same experience as everyone else,” she told me. So, she stepped back and did her own thing. And by not exposing herself to reminders of all the stuff he couldn’t do, she said she was able to focus and celebrate more on what he could. “I remember when Tom was over two and not walking yet, my mom said, ‘Someday we’ll be glad we got extra time to snuggle with him, because eventually he won’t want to.’ And you know what? I am glad I got extra time to snuggle with him, because now he is 11 and five feet tall and doesn’t want to snuggle.”

Among the bad, there is good. Maybe you need to hold a microscope over life to find it some days but it is there. Even if you have to put it on mega-magnification to find it! Like Betsy said, “One day I was reading a book about these women struggling in Afghanistan, and I said to my friend, ‘At least we live in America. When we flip the light switch, the lights go on. Every time.’”

So if you’re noticing a lot of bad stuff, actively seek out the good. Find one thing to feel positive about. What smart, cute thing has your child done today? What’s so them you love them to bits for it? Or what might you look back on and appreciate years from now about your time together today? Maybe it’s their funny giggle, a big bear hug, a small step forward, or a moment of calm together in a rough day. Maybe it’s a reminder of how lucky you are to have your little one in your life every day.

For me, as I work through my own personal struggle, that’s where happy is, in focusing on the small good things. Easier said than done? Absolutely. But when you find something you can feel truly happy about, it’s worth all the effort to try.

Thanks again to Amy for a great guest post. Now, a book giveaway! To enter to win one of three copies of Bright Side Up, just leave a comment about what your idea of happiness is. Note, if your email is not visible on your blog, you must leave it here. This giveaway is open until Wednesday, February 15 at 11:59 p.m EST. I'll randomly select three winners via random.org, contact them and announce them here.

Update: The winners are KarenP, Clara and Melissa. Enjoy the book, may it bring you extra bliss.

Sarah Palin, allow me to adjust your special needs attitude

noreply@blogger.com (Ellen) — Thu, 09 Feb 2012 11:45:00 +0000

By now you may have read Sarah Palin's essay for Newsweek, Life With Trig: On Raising A Special-Needs Child. She's talked before about her feelings on having her son, who has Down syndrome, in her 2009 memoir Going Rogue: An American Life. This time, she got into particulars of bringing up Trig. Putting aside our political differences, I appreciated it when she noted that families of kids with special needs are "bonded by a shared experience of the joys, challenges, fears and blessings of raising these beautiful children whom we see as perfect in this imperfect world." That's so true.

Still, she didn't need to mention the fears/challenges of raising a kid with special needs nine times. In general, I thought her attitude toward kids with special needs could use some adjusting. And so, in the spirit of that special needs connection we share, I thought I'd offer up a few footnotes to snippets from her essay. Because, you know, she regularly reads this blog.

Sarah said...

"Yes, raising a child with special needs is a unique challenge, and there's still fear about my son Trig's future because of health and social challenges; and certainly some days are much more difficult than if I had a 'normal' child."¹

"He may not be the next Wayne Gretzky,² but our hearts are filled with so much pride watching Trig giggle with his sister's puppies or...."

"My family knows that Trig will face struggles few of us will ever have to endure, including people who can be so cruel to those not deemed 'perfect' by society. The cruelty is more than made up for³, though, when someone simply smiles at our son. Nothing makes me prouder.⁴ ⁵

"Todd actually makes Trig's pureed baby food!"⁶

1 Please, quit thinking about Trig as "not normal." It does him no good to compare him to other kids, or to compare him to anyone. He is his own normal. Try to appreciate your son for what he can do, for what he does do, and for who he is. Be his cheerleader.

2 Every kid with special needs has his own unique abilities for doing well in this world. Think of Trig's success in terms of his capabilities, not Wayne Gretzky's. Realize, too, that he's very young with so much potential, and you don't yet know what he's capable of. Rethink your idea of success, just like you had to do following a certain presidential race.

3 Sorry but, perhaps you've inhaled too much hairspray? N-O-T-H-I-N-G makes up for people's cruelty toward kids with special needs. Cruelty comes from ignorance and stupidity. You can't cure stupid, but you can make clueless people more aware that kids with special needs are kids like any other kids—and that they are not an entirely different species.

4 I'm wondering if your press person slipped in this line and you didn't notice, because I have a hard time believing that you're more proud of people's smiles at Trig than you are of Trig himself. Forget what people think. The only validation you need of Trig's awesomeness is Trig himself, who has surely overcome many challenges in his four years of life and who has surely been making progress. Look to Trig and take pride in him.

5 I've seen the way strangers smile at my kid and others with special needs, and often they are not "Isn't he cute!" smiles. More typically, they are "Oh, that poor thing, isn't he cute!" smiles laced with pity. Sometimes, people have even said "Poor thing!" Teach the world not to feel bad for your child. That's one of the greatest gifts you can give him—and all of our kids with special needs.

6 Props, Todd! Special needs dads don't get enough credit for all they do. Perhaps, though, you could have a little chat with your wife about that whole "not normal" thing?

Photo/Joeff

This week, the world lost an amazing woman. Will you help honor her memory?

noreply@blogger.com (Ellen) — Wed, 08 Feb 2012 03:30:00 +0000

Every once in awhile, you meet a person who makes you very aware of what it means to be a truly exceptional human being. A person who genuinely cares about the well-being of others, who is the opposite of selfish, who's warm and kind and real and who perhaps has a wicked sense of humor, too. For me, Susan Niebur was one of those people. I found out today that she had died. She was 39.

A mom of two and a planetary scientist, Susan wrote Toddler Planet. For the last five years, she's lived with inflammatory breast cancer. No form of that is ever good but IBC is a particularly nasty, aggressive kind. Susan took it on with grace, humor, wisdom, honesty and extreme guts. Four times, she won. Along the way, she dedicated herself to educating people and raising awareness about IBC. She launched the support site Mothers With Cancer. Susan had young children and yet, she never stopped thinking about ways she could help others. She inspired countless people. She saved the lives of countless women.

One of the side effects of having a mastectomy is lymphedema, swelling in the arms that comes from removal of the lymph nodes. Two women created a special compression sleeve to help control the swelling, which Susan had benefitted from. Not everyone could afford the $1oo for one, though, and Susan got the women to donate ones to women in need. Then she started a project to raise awareness about the free sleeves—and along the way, raised money for more of them.

Susan's efforts won her a Blogantrophy Award; the ceremony was at the Type A Parent Conference, and that's where I met her. She knew who Max was. "Everyone loves that Max!" she said. This was last June, and her prognosis wasn't good; the cancer had metastasized. But she didn't want to talk about herself. No, she just wanted to know how Max was doing. She only wanted to talk about Max.

That is the kind of person Susan was. I didn't know her well, but all you had to do was read her blog or meet her for a few minutes in person and you knew that people like Susan don't come along very often.

I'm hoping you can join in with honoring Susan's memory. Her husband asked that people consider "furthering Susan's legacy" by making a donation to Inflammatory Breast Cancer Research Foundation. "Or please choose to make a difference somewhere, anywhere, to anyone," he writes.

Here's a simple thing: Take a look at this brochure about the symptoms of IBC. You're doing it for Susan, but you're also doing it you—and, really, that's all Susan would have wanted.

Special needs motherhood is the necessity of invention

noreply@blogger.com (Ellen) — Tue, 07 Feb 2012 11:45:00 +0000

"Ever notice how being a special needs mom means that you have to be really creative in your thinking?" Barb recently emailed me. She's mom to Rhys, who's 8 and has cerebral palsy. And, yes, I knew exactly what she meant. I've always been an out-of-the-box thinker but since having Max, I have become uber-uber-uber-resourceful. Barb had a great story to tell:

"Before Christmas, I was sitting on the floor with my son's wheelchair headrest in pieces, trying to rebuild it so that it would work better because the one we have is terrible. As I am doing this I think to myself, 'Who knew that becoming a Mom would mean that I need to be a mechanical engineer?' And then it hit me—I am not a mechanical engineer, but there is a great university 45 minutes away with a top-ranked mechanical engineering department. So I sent them an email, a desperate email begging for help. Today I had two seniors at my house measuring and taking photos to start the process of rebuilding the headrest, and a mount for the Dynavox! Utilize all the local resources—what's the worst they can do, say no? How are you any worse off?"

Exactly. Me, I've done everything from requesting therapy help at a local college's occupational therapy department to having a seamstress make special absorbent bibs for Max. As amazing as it is to have Team Max—his therapists, teachers and doctors—sometimes the best ideas have come from me. [Pats self on the back.]

It also helps to be shameless and super-pushy, two winning traits when it comes to having a kid with special needs (I once described myself as a "bulldozer.") I'm not so much this way in real life but, man, when it comes to Max I will ask anything and do anything for him.

What sort of resourceful things have you done lately to help your child? Please share, so your brilliance can help others! And allow me to give you big old cyber pat on the back.

Photo/ideum

On wanting more, more, more speech progress. Because I'm greedy like that

noreply@blogger.com (Ellen) — Mon, 06 Feb 2012 11:40:00 +0000

Max has been on a birthday kick lately. Ever since his own birthday, he thinks:

1) Every day is his birthday. Also:

2) Every birthday party he goes to, he believes he deserves a candle and a round of "Happy Birthday To You."

The second thing can get a little tricky. As for the daily birthday, I have to say, it's not a bad thing to go through life thinking every day is your birthday.

Max also likes to pretend that he is 7 and Sabrina is 9, even though he knows full well he is 9.

Saturday the kids went to a friend's birthday party at a pottery-painting place. Max made a chocolate ice-cream cone. Then Dave helped him with a purple cup, and Max watched carefully to make sure every single bit of cup got coated in paint.

"Dad! You missed a spot!"

At Max's bedtime, we were talking about birthdays. He regularly tells me he wants a birthday party and a Cars 2 ice-cream cake, and I humor him. There are worse parenting mistakes I could make (and, heck, I probably have).

We started discussing how many candles would go on his cake. All of a sudden he said, giggling, "Sabrina is nine, Max is seven!" And I was floored: It was the first time he'd ever said two full phrases in a row like that. The kid could have said "I want to rob a bank, will you drive the getaway car?" and I would have been thrilled.

Max's speech patterns are progressing. He's been talking a lot lately; the iPad and Proloquo2Go seem to encourage more speech, not less (something I know a lot of parents fear about communication apps and devices). I hear him babbling in bed at night, before he drifts off to sleep. He rambles on and on in the back seat, when I'm driving. It is heartening to hear and yet, I'll admit, at times I get heartbroken that he's so hard to understand unless you speak "Max."

Max being Max, he just keeps on talking. He is not aware he is hard to understand; he's just loving the sound of his own voice. And I know I should chill and enjoy the sound of his voice, too, and stop aching for those words of my dreams.

Cool coloring stuff for kids with special needs and other Stuff Worth Knowing About

noreply@blogger.com (Ellen) — Sat, 04 Feb 2012 12:00:00 +0000

Great crayons for kids with special needs: Alex Creamy Crayons glide so easily—they've really enabled Max to color. You can wrap modeling clay, gauze or Coban Wrap around them to make them easier to hold. They get expensive only if your kid will only use purple ones. Not that I know any kids like that.

Love these cards! Save The Children has adorable, limited-edition Valentine's Day Cards designed by popular children's authors including Mo Willems (Don't Let The Pigeon Drive The Bus!) and Ian Falconer (Olivia!). Give $25 and you'll get a set of 30, 6 cards of each design. The donation will help kids in the U.S. living in poverty. If you order by Feb 6, you'll get them in time for V-Day.

A great art activity: Marjie, one of Max's awesome occupational therapists, tried this Color-Fillz Mosaic with him the other week and he loved it. The pieces are made of modeling compound so he could get a grasp and pick them up to assemble into the shape.

Enter this giveaway: Debbie over at Finding Normal, another mom to a kid with special powers, is giving away this cute Organizing Utility Tote from Thirty-One Gifts (note, the bag won't be personalized, as it is above). You can enter from now until Sunday, Feb 19. Please do!

Get a new playground for your 'hood! A Let's Play playground I helped build when I was in New Orleans this spring at Mom 2.0 (above, the before and after) is now totally done—and there are more Let's Play grants available. Go get 'em!

Attention Club Med fans: Club Med has a cool new mobile app with features like "Shake and Escape" that allows you to shake your iPhone for destination ideas. I'm still hoping for an app that does your packing for you.

Nominate a book for kids with autism to win a prize: MeeGenius is running an ebook contest; readers can vote for the next great children's book author. An online friend mentioned that her pal, Greg, has written a book about autism from a child's perspective. You can read the book online, and then vote for it.

Need a mani-pedi? A massage? I do. So, Dave, FEEL FREE TO BUY ME A SPAWEEK GIFT CARD BECAUSE THEY ARE 10 PERCENT OFF UNTIL FEB. 15. HINT HINT HINT HINT HINT HINT HINT HINT HINT HINT HINT HINT HINT HINT HINT and HINT ETC.

Club Med/WallyBaba