Monday, December 31, 2012

The Love That Max Year In Review 2012


In January, Max learned to love skiing; I shared The Stuff Special Needs Moms Say; and we all got outraged about a hospital's initial decision to deny a child with special needs a kidney transplant.

In February, I asked people to see the ability, not the disability and couldn't resist joining in the What I Do meme.

In March, Max wrote his own name; I told people what I'd like them to say to my child with special needs and once again asked them to not use that awful word.

In April, Max became a barfly, a teen with Down syndrome was crowned prom king, and the girl with Down syndrome who'd become a cruel web joke was found.

In May, Max rocked his spring concert and I cried from happiness at the IEP.

In June, Max hit a backyard home run and bowled like a champ; I told the world that my child with special needs is not a burden to society and created Special Needs Moms: The Reality Show.

In July, Max asked the best question in the whole wide worldgot very brave and starred in his own backseat version of Call Me Maybe; I debuted 50 Shades of Grey: Special Needs Mom Edition.

In August, we celebrated The American Cheese Milestone and a slideshow of our kids.

In September, Max walked up stairs by himself for the first time and I explained why people shouldn't pity kids with cerebral palsy.

In October, Max got his dream job; I asked people to smile at a special needs mom and outed people who cling to the word retard.

In November, Max debuted scrambled eggs therapy; readers shared their favorite toys for kids with special needs and also raised $3000 to help a mom hit by Sandy.

In December, I celebrated ten years of Max and hoped for more than happiness for him.

I hope 2013 is a celebratory year for you and your kids, too.

What are you celebrating from this past year?

Photo: Yasmeen Anderson

Friday, December 28, 2012

Special Needs Blogger Weekend Link-Up: Enter here!


It's another weekend link-up for bloggers with kids who have special needs, and I'll bet you have all sorts of great stuff to share.

The idea

Share a favorite post of the week.

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).

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, December 27, 2012

When parenthood is hazardous to your health


Parents of kids with developmental disabilities are more likely to have high blood pressure, says a new study published in the journal Research in Developmental Disabilities. The researchers compared 35 parents of kids with autism and Down syndrome to 30 with neurotypical kids.

Parents of kids with developmental disabilities reported higher levels of stress—but researchers didn't find that affected blood pressure, as much as social support did. Parents who reported not having enough support from others were the most likely to have higher blood pressure.

This? Not so surprising if you are a parent of kid with special needs. What's astounding is that researchers haven't yet pinpointed other health issues related to the care of a child with disabilities, like back and neck strain, headache, heart palpitations and an occasional desire to bang one's head against the wall.

My blood pressure's pretty good, but I have to say that lifting Max sure isn't easy on my back. Although I still lift Sabrina, too, and she's got a good ten pounds on him. Come to think of it, she's more likely to make my blood pressure rise.

Parenthood should come with health insurance, right?!

Wednesday, December 26, 2012

Thoughts on the end of 2012


• I hope the families of the children and adults who died in Newtown, Connecticut are finding comfort in the fact that the thoughts of people around the world continue to be with them.
• I can't stop picturing those children's faces, particularly this 7-year-old, Josephine Gay, who had special needs and loved purple. Children released purple balloons to the sky in her memory. "She could not speak, yet she touched the lives of so many around her," said her parents.
• It's been heartening to hear about efforts in the wake of the shootings, like the young woman at Brandeis University who created Project 27, encouraging people to do 27 acts of kindness—one for each victim.
• Hope people won't forget about the victims of Sandy.
• This was the saddest fall I can ever recall. Just like children have magical thinking, I've found myself wishing it were all a bad dream.
• Need to spend more time doing stuff that's meaningful in new year like projects with kids; hanging out with my mom, sister and other family; and talking with Dave at night instead of sitting on couch typing away. (Er, like I'm doing now.) (Although he's conked out and snoring.)
• Need to spend less time doing Sisyphean house stuff like organizing a bazillion loose toy and game pieces. As Sabrina would say, what-ever. When I am 92 years old, will I give a crap that I managed to keep every single Lego piece together? Exactly.
• I'm pretty sure I spent a disproportionate amount of time in 2012 watching HGTV.
• I'm also pretty sure I spent a disproportionate amount of time in 2012 not working out. Although my wrists are spectacularly svelte.
• How is it possible I still haven't gotten around to watching that Gangnam Style video?
• Although I do get the allure of Channing Tatum (purely on a philosophical level, Dave) even though I sometimes accidentally refer to him as Tatum Channing.
• Wonder what sort of awesome things Max and Sabrina will accomplish in 2013.
• If Sabrina doesn't quit asking me to buy her stuff off Amazon.com, I am asking Jeff Bezos to adopt her.
• Is this the year I'll finally give up my paper planner? Hmmm. Wonder if Tatum Channing has one.
• Proud that I managed to remember all of my passwords to various accounts, even though they do not involve the name Channing Tatum.
• "Another year older, and what have you done?" Well, on any given day I do approximately 1,753 things ranging from "schedule appointment with physiatrist because Max's right foot is tightening up" to "wipe child's butt." I'm surviving a basement renovation (Friendly Yellow is looking good). I'm raising two wonderful kids (materialism aside). And, miraculously, I'm not even getting older!
• I've been writing this blog for more than four years now, and I love it as much as ever.

Thanks for being part of my 2012; I'm so glad you're here. xo


Image: istock/eduleite

Tuesday, December 25, 2012

Err-ay Iss-us, says Max


As you read this we're cruising on The Disney Fantasy, which is entirely appropriate because Max has been fantasizing about this trip for months. He has vowed to order macaroni and cheese with ketchup from room service for breakfast, lunch and dinner, and Sabrina has vowed to stay up till at least midnight for every night. My plans including depositing them both in the fabulous Kids Club and lounging by the Adults Only Pool!

I hope you have a wonderful holiday with your family—and that you get a break, too.

Max heartily wishes you an Err-ay Iss-us.

Monday, December 24, 2012

This Is How I Do It: Louise Kinross of BLOOM



Here's another guest post in the This Is How I Do It series, which features bloggers who have kids and teens with special needs. They're sharing their strategies for bringing out the best in their kids—and themselves. 

Blogger: Louise Kinross of BLOOM


Her kids: Ben, 18, (right) who has Langer Giedion Syndrome (bone disorder; dwarfism; hearing loss; intellectual disability; uses sign language; still manages to love life) and Kenold, 14.

My three biggest secrets to sanity are... 

Yikes. I wish I could think of one! Okay, I guess regular cardio exercise. Occasionally going away on a business trip by myself. Walking on Cherry beach at Lake Ontario in every season.

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

I’m lucky that at this stage Ben doesn’t have the multiple appointments he used to have. I use my Outlook calendar and a calendar in our kitchen. I try not to rely on the files in my brain because they’re rapidly depleting. I’ve had too many situations where I’m sitting in the car, look at the clock, realize it’s 3:30, and at that second my mind pulls the file that says: “We have a physio appointment—at 3:30!”

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

Go see a live band and dance and cheer and scream until I’m hoarse. I just did this for the first time in years and I highly recommend it!

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

Knowing that in the end love is all that matters; spending fun time with Ben with no expectations; reminding myself that I can't imagine life without my son; being gentle with myself (okay, that’s four things!).

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

In the early days I was at home so I managed most of the therapies, appointments and advocacy related to Ben. When I went back to work my husband began doing many of the appointments. Over the years he’s branched into other roles too, like filling out paperwork to apply for a wish or to get funding.

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

HHHMMM. In the early days I was hyper-sensitive to how people reacted to Ben. Over the years I lost that radar: I stopped looking to see whether they were – or weren't – looking at him or responding negatively. I have always believed that it helps to educate – so I try to explain Ben in a way that puts people at ease. That said, there are days when I’m in no mood to educate, so I cut myself some slack. There was one funny time when I took Ben to pick up his sister at school. We were standing outside, and there was a group of teens staring at Ben and whispering. They didn’t respond to my “evil eye” so I barked: “Do you have any questions? Because if you have any questions, I can answer them!” That shut them up really quick. But that’s not my best response.

One great therapy technique I recently learned for my child from his therapist that I like doing with him is…

We did too much therapy when Ben was young. I think the best therapy is being with your child and doing activities that bring your child joy and enable your child to feel successful.

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

I follow lots of special-needs parenting blogs and blogs that track disability stories in the news (Media Dis and Dat is one). I read The New York Times Sunday Book Review and surf Amazon to find memoirs or fiction books that relate to disability. I use Google alerts for stories with the keywords “disabled children” and “disability research.” I keep up to date on journal studies by following Eureka Alert. Some sites where I go for inspiration are: Positive Exposure and Andrew Solomon’s Far From The Tree. I find Pema Chodron’s books valuable—as well as mindfulness meditation (I don’t have time to do these things, but when I do, they’re really useful).

I rock because…

I choose to rock. It’s a choice!

Friday, December 21, 2012

Special Needs Blogger Weekend Link-Up: welcome!


It's another weekend link-up for bloggers with kids who have special needs; I love the sharing that's been going on.

The idea

Share a favorite post of the week.

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).

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, December 20, 2012

The gift of adapted toys for kids with special needs


When Max was two, one of his favorite toys was a battery-operated puppy with an adaptive switch; all he had to do with hit a big blue button and the puppy would bark and walk. (I can still hear that yap-yap-yapping in my dreams). Playing with toys was challenging for Max because his fingers and hands were stiff. So the pup was great, both because of the fun factor and because it gave Max confidence that, yes, he had the power to play. His hands could make things happen.

Yappy Puppy (not his real name) also came in handy for inspiring Max to move his body; the physical therapist would place the switch just out of reach, and Max would have to wiggle his way over to it. Dave and I used to joke that if Yappy Puppy got Max to bark, that would be great, too, because he wasn't making many sounds back then. (Ah, special needs parent humor.)

Adapted toys and switches can be costly, but a bunch of kids recently received 135 toys and switches for free at a very special holiday party thrown by the East Tennessee Technology Access Center in Knoxville. The nonprofit's motto—"Where disabilities become possibilities"—speaks to its mission to inform people with disabilities about tech devices that can educate them and enable them to lead more independent, productive lives.

After receiving a grant from CVS Caremark Charitable Trust for tools and supplies, a group including occupational therapists, retired engineers, electricians and high school and college students started working on adapting more than 100 battery-operated toys donated by the community.

Do try this at home: Adapters attached a wooden knob to a button on top of a toy truck so that a child with downward gross-motor movement could easily activate it.

This boy got a voice-activated penguin

Happiness is an adaptive cuddly dog!

Giving toys to kids in needs during the holiday season is always wonderful, but giving the gift of accessibility is especially awesome. 

What sort of experiences have you had using adapted toys and switches? Will your child be getting one for the holidays?

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


Wednesday, December 19, 2012

Understanding autism: a cool new video to raise awareness


Tonight a Twitter follower shared an awesome, goosebump-inducing video, Fireflies, about a boy befriending a girl and a lesson learned about understanding autism. Given the recent terrible misconceptions about Asperger syndrome, it seems particularly timely.



Created by The Jubilee Project, a group that creates videos for a good cause, the short film was inspired by Taylor Swift's You Belong With Me music video. They're hoping to rope the singer in to raise awareness, so if you're on Twitter tweet something like this anytime between now through December 22:

@taylorswift13 we need your help! Please watch and tweet @JubileeProject short film #Fireflies for #autism awareness! bit.ly/JPFireflies

Or just click here to send out a tweet. You can read more about what The Jubilee Project is aiming to do over at YouTube.


Image: screen grab/Fireflies


Max has some holiday wishes for you


I took Max to his annual doctor's appointment yesterday evening. If felt good to do something mundane, a way to take my mind off the Newtown massacre.

Max acted like he owned the office. He greeted the manager, Pat, and noted that his teacher had the same name. He showed one mom and kid a packet of Cars 2 napkins he's been toting around. When a nurse took him back to an exam room, Max asked for a corner one and she obliged, like he was some finicky restaurant patron who needed a better table.

The exam went well. Max is growing nicely. His heel cords are tight, particularly his right one, which his physical therapist has also noted; it may mean another round of serial casting (sigh). Max told the doctor all about his Cars 2 party and our upcoming Disney Cruise.

On the way out the door, Max turned to the staff at the front desk and said something, I couldn't tell what. He repeated it, then again: "Err-ay iss-us!"

Max was saying "Merry Christmas." I told the ladies behind the desk, and they grinned happily. "Err-ay Iss-us!" Max said again, waving as we walked out the door. "Err-ay Iss-us!"

As we headed to the car, I told Max that a lot of people like to say "Happy Holidays."

"No!" said Max. "Err-ay Iss-us!"

"Um, Max?" I said. "We celebrate Chanukah in our family."

"NO!" said Max. "Iss-us!"

"Some people celebrate Christmas, some people celebrate Chanukah, and some people celebrate Kwanzaa," I answered. "We celebrate Chanukah!"

"NO!" said Max. "Iss-us!"

I didn't think Max was having a faith crisis; I suspected he figured he could get more presents if he convinced me we celebrated Christmas, too. I also thought he liked saying "Merry Christmas!" because of the reaction he got.

To be sure, this year Max was really into lighting the Chanukah candles, holding my hand as I lit each one. He downed a whole lot of latkes, traditional potato pancakes that are a handy excuse for carb-holics like me. The other night when I told him to wish the babysitter "Happy Chanukah," he said it super-clearly and it was THE best gift I could have gotten. "Can you tell her again?" I'd asked just to hear the words one more time, and he did.

As I put Max to bed, he looked at me and said, "Err-ay Iss-us!"

"Happy Holidays," I said back, and quickly shut off the lights so he couldn't see me smiling.

Tuesday, December 18, 2012

On not talking to your kids about the Connecticut tragedy


"So, did you hear about anything unusual from other kids at recess or during lunch?" I ask Sabrina when I pick her up at the bus stop. She gives me a puzzled look. "No, what do you mean?" she says. "Oh, nothing," I say, back-pedaling. Although Sabrina's school wasn't having a formal discussion with the students about the Newtown, Connecticut shootings, I'm probing to see if any talk cropped up among her friends.

Dave and I made a decision not to discuss what happened with Sabrina. While she understands what guns can do, she is just 7 and a tragedy like this is beyond her comprehension. No matter how simply we explained it or how much we reassured her, I know she'd still harbor concerns about safety in her school. We didn't turn on the news over the weekend when the kids were up or talk about the tragedy in front of them. En route to dinner Sunday night I roamed around my iPhone as the kids watched a DVD; I saw a photo on Pinterest of a little girl who died and had to choke back sobs.

Max has a naivete all his own—he doesn't yet get the ideas of guns and killing. It's given me pause, as it did with the Colorado movie theatre massacre this summer. I want him to have this level of understanding; it would mean cognitive progress. And yet, I don't want him to have this level of understanding. I want to protect his innocence while I can, like I'm doing with his little sister. (The New York Times' Motherlode blog had a helpful post on the topic).

I've felt twinges of guilt; don't the kids and adults who died deserve to be talked about? Shouldn't their memories be honored? Isn't that what their parents ache for, for their children's flames to keep flickering? As I watched one dad discuss his beautiful little girl, it was clear how much he wanted the world to know how wonderful she was.

Right now, though, this isn't something we'll be talking about with the kids... not yet. Someday. It's felt strange behaving normally around them, because I don't feel that way. My mind keeps flashing to the numerous photos I've now seen of the children and the adults who died on that Friday morning. I've been overcome with fierce urges to touch and cuddle and devour the kids with my love. I am typically over-the-top affectionate, but I've never needed to feel them so much, to know that they are here.

At bedtime last night I lay in bed next to Max, nuzzled his cheeks and thought of what those parents must be going through, though I couldn't imagine.

"Ohmmmy," Max said, bringing my mind back to the present. "Eeese!"

He was asking for a piece of American cheese, same as he does every night. It was all he wanted, and all he needed, and I got up and trudged down the stairs to get him a slice.

Image: Flickr/Kaswar_K

Saturday, December 15, 2012

The Connecticut shootings: What's autism got to do with it?


Adam Lanza, the man who killed 20 children and six adults on Friday, may have had Asperger syndrome, along with a personality disorder, some news reports are saying. I'd been weeping as I Googled about what happened, but when I read that I felt a flare of concern: Why was autism playing into this tragedy?

School shootings may be getting more common in modern-day America, but so is pointing the finger at autism as the cause—and it could hurt kids and adults with special needs like Max.

From all descriptions, Lanza had social issues. He kept to himself, didn't have a photo in the high school yearbook or a Facebook page. In a New York Times article, one classmate described him as having a "very flat affect." Yes, people with Asperger's can be like that, but it doesn't mean they are killers in the making. Asperger's may just turn out to be one component of this man, a condition such as vision impairment or cerebral palsy that has nothing to do with violence. 

"Having Asperger's or the autism spectrum... does not carry any bearing on whether or not you will become—for lack of a better term—a 'good person' in this life," notes Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership, in a statement the organization issued. "While the majority of statistics prove that we are infinitely more prone to be the victims of violence than the perpetrators of violence, we are not immune from becoming people capable of making terrible, horrible choices."

Asperger syndrome and other autism spectrum disorders are neurodevelopmental disorders, not personality disorders. People with Asperger's may be prone to behavior like aggressive outbursts and temper tantrums—but there is no proof they are prone to violence, says psychiatrist Mohammad Ghaziuddin, M.D., in his book Mental Health Aspects of Autism and Asperger Syndrome

"Since people with a variety of psychiatric disorders, ranging from schizophrenia to conduct disorder, can behave violently it is unclear to what extent people with autism spectrum disorders should be singled out as being particularly vulnerable to offending behavior," writes Dr. Ghaziuddin, a professor of child and adolescent psychiatry who specializes in autism spectrum disorders and teaches at the University of Michigan, Ann Arbor. 

He goes on to note that even when people with autism do commit violence, the underlying reason may be a psychiatric disorder, such as major depression or psychosis. In one Swedish study that compared people who committed violent or sexual offenses who had Asperger syndrome with criminals who did not, the authors concluded that violence perpetrated by someone with Asperger's is related to "similar co-occurring psychcopathology"—again, there has to be some other trigger. Drugs or substance abuse may also come into play.

The same autism finger-pointing happened with James Holmes, the man who went on a shooting rampage at a movie theater Aurora, Colorado. MSNBC host Joe Scarborough, speculating on the perpetrator, sparked widespread outrage and a change.org petition when he remarked, "Most of it has to do with mental health. You have these people that are somewhere, I believe, probably on the autism scale. I don't know if that's the case here, but if happens more often than not." Scarborough, who has a son with Asperger's, later apologized, saying he could have stated his remarks more "eloquently."

The grieving families in Connecticut want answers. So does the world at large; incidents like this shatter our security and make us fear for our children. Discussions about gun control are one thing; implicating Asperger's has far-reaching consequences for children and adults with autism and other special needs.

"I already have had family members look at me oddly since James Holmes. I am getting nervous," wrote one commenter on the autism online community Wrong Planet, in a thread labeled "NOT GOOD, Connecticut shooter was diagnosed with Aspergers." Said another, "I hope that we are not stereotyped and singled out for this crap. I have been bullied and beat up enough in my 22 years."

Max has cerebral palsy, but as his mom I worry that linking Asperger syndrome to a massacre like this only makes people more wary and fearful of those with special needs. Even if it turns out to be untrue, the damage has already been done. Kids like Max have enough social challenges to contend with. Demonizing the special needs of a murderer can create other victims: children and adults with special needs. Let our hearts grieve for the families who lost loved ones, but let's keep our heads on straight about the whys.

Photo: The Newton Bee/Shannon Hicks

Friday, December 14, 2012

Special Needs Blogger Weekend Link-Up: ho, ho, ho!


It's another weekend link-up for bloggers with kids who have special needs. How merry does that make you?

The idea

Share a favorite post of the week.

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: If I Talk About Cars 2 Anymore I Might Just Die

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, December 13, 2012

Video bawl-fest of the week: a tribute to a sister with cerebral palsy


When Lisa Kandziorski, 18, started college at Southern Illinois University in Carbondale this fall, she got a really awesome roommate: her sister Lisa, 22, who has cerebral palsy. Amy's planning to be a social worker; Lisa's studying to be a kindergarten teacher, as reported on New Lenox Patch.

For Christmas, Amy created this tribute to her sister. It's a two-tissue video because of the love that shines through your screen, but it's also inspiring. "Never give up... Lisa didn't," Amy notes.

Words for our kids to live by. Heck, us too!

Wednesday, December 12, 2012

Funny stuff kids and teens with special needs say


"Ooool," said Max. I'd asked what he wanted me to put on top of his max 'n cheese. Usually, he says "Ehhh-uh" ("ketchup"), and I had no idea what "ooool" meant.

"Can you show me on the iPad?" I asked, wondering if the word was in his speech app.

"Nooooo," he said.

He gestured toward his mouth and down at the bowl of mac 'n cheese on the table. Then he wiped his mouth back and forth.

"Ohhh!" I said, laughing. "You put drool on your mac 'n cheese!"

Max cracked up and nodded. He has a habit of drooling, from the cerebral palsy. Max never used to notice or care; lately, he notices but still doesn't seem to care. "Wipe your mouth!" is a common refrain heard around our house. Max was joking with me about drool on his mac 'n cheese.

This isn't the sort of joke that would fly on David Letterman. I'd venture to say that few people in this world would find it at all amusing, and their names are Dave, Ellen, Max and Sabrina. You have to be a member of a very special club to get it.

While joking about special needs doesn't always go over well with other people, in the confines of our family it's OK and laugh-worthy. I thought it was rather awesome that Max was being self-depracating, too. "Child laughs at own drool" is not a milestone you'd read in any of the child development books, but it shows a certain level of cognition.

At times, we have to laugh about the things Max and our family deal with. It lightens life up, makes Serious Things seem less so. We are laughing with Max, of course, not at him. Sabrina actually does this dead-on impersonation of Max's speech that makes all of us giggle like crazy. Cruel? It might seem that way if you don't have a kid with special needs. But for us, this is a normal part of being a family; we good-naturedly make fun of each other. When Sabrina has a meltdown, as she's prone to do, Max has been known to get down on the floor and imitate her ridiculous flailing.

It would be abnormal if our family treated Max as if he were too fragile to tease.

I got to thinking about special needs humor yesterday, when a friend connected me with another special needs parent. Alison is mom to Zach, 15, who has autism. We were trading notes on holiday travel plans and she told me that one of her family's most "notorious" vacation stories is when they got on an airplane and Zach shouted "Oh, I have a bad feeling about this. I left my weapons at home!"

I could not stop laughing.

Oh, but Alison wasn't done. She proceeded to tell me about the time her family went to what she described as a "fancy-schmancy" restaurant. Zach started calling for her really loudly. When she asked him to lower his voice and tell her what he needed, Zach said, in a "not-so-inside" voice, "Mom, I left my penis in my blue pants." !!!

OK, so I know you guys must have some rather precious moments of special needs hilarity. Share! I think we could all use a laugh right about now, yes?

Tuesday, December 11, 2012

On hoping for more than happiness for your child with special needs


Max was out of his head with happiness at his birthday party, because it was exactly what he'd ordered: one visiting clown, one Cars 2 ice-cream birthday cake with his photo on it, assorted Cars 2 paper goods, lots of friends from his class, his little cousins.

Nothing in this world makes me happier than seeing my kids happy. And yet, lately I've been thinking that I want more than happiness for Max.

Over the years, when I've worried about Max's development and capabilities, people have told me the most important thing is that he's happy. I know that's basically true, and that projecting my ideas of happiness onto him doesn't do either of us any favors. When my heart twinges about stuff he's not doing, I can think about how happy Max is and stop the ache.

I am very lucky, I know, to have a child who is truly happy most of the time (unless the store making his birthday cake accidentally uses—horrors!—green icing, in which case wailing will ensue). Max literally beams when he gets up in the morning. He giggles easily and frequently. He squeals when he's excited. He smiles as he kisses me. He is a walking ball of joy, this boy.

Here's the thing, though: I would like for Max to experience so much more than happiness in life. I'd like for him to find satisfaction in work, as I do. I'd like for him to feel the tenderness of being in a relationship, to find enlightenment in traveling to new places, to take pleasure in a hobby (ideally, one that does not involve Lightning McQueen). I'd like for him to know the wonders of deep friendships, and the thrill of independence.

Years ago, when big hopes like these would spring up, I'd repress them. I feared I'd be setting myself up for crushing disappointment. In some ways, my hopes remain tempered—I don't think about Max going to Harvard and becoming a doctor, or that he will climb Mt Kilimanjaro. My hopes are all within the realm of possibility.

But, yes, I'm letting myself have bigger dreams. I am hoping for a richer life for Max, one in which he knows more than happiness. And I'm ready to take the risk of hoping. Max deserves that. There are so many doubters in the world, people who don't understand the abilities of those with special needs. If I don't have these hopes for him, who will?

Monday, December 10, 2012

Ten years of Max: a love note


Dear Max,

This week you'll be 10 years old, and it is hard to wrap my head around that. In some ways, I can vividly recall your birth and first year. And in some ways, they seem like a lifetime ago.

Your progress this past year has been especially wondrous. I get ecstatic when you do something new, because it opens up new horizons for you. Thing is, you have never stopped amazing me and your dad, and inspiring people around you. 

This is the first year you...
...started spelling out words on your iPad and got the gist of telling time.
But you've always been...
...bright.


This is the first year you...
...started asking questions, like when I said we'd be going on a Disney Cruise in December and every morning afterward you'd wake up and ask "Oooh-aye?" ["Today?"]
But you've always been...
...curious.


This is the first year you...
...walked up stairs by yourself.
But you've always been...
...determined to move your body, however you could.


This is the first year you...
...got into cooking; making scrambled eggs is your fave, with your dad standing guard.
But you've always...
...loved to eat. Oh, what a chubalicious baby you were. Confession: I used to nibble on your arms and legs. I did.


This is the first year you...
...liked purple.
But you always...
HA! JOKE! You've been purple-centric for more than three years now, and you're not showing any signs of letting up.


This is the first year you...
...got markedly better at grasping things, even with that right "helper" hand. And wow, can you point!
But you've always...
...tried so, so hard to manipulate your hands and fingers.


This is the first year you...
...were toilet trained! WOOOOOOOOO HOOOOOOOOOOO!
But you've always been...
...a champion pooper. In the months after you were born, one of the ways your dad always made me smile was with a song called "Max makes big dooooooodies!" (Be grateful YouTube wasn't around back then.)

This is the first year you...
...and Sabrina really started playing together.
But you've always...
...adored her.


This is the first year you...
...started looking like a big kid—a very handsome big kid.
But you've always been...
...the most beautiful, smiley boy I have ever known.


Happy, happy 10th birthday, my Max. You make me proud and happy every single day.

Love,

Mommy

Friday, December 7, 2012

Smart occupational therapy ideas for kids from the St. Jude Children's Research Hospital team


Max has been immersed in therapy since he was a month old when Mindy, the physical therapist from Early Intervention, started visiting. Occupational and speech therapy followed within the year; vision therapy, too.

Before I had Max, I'd never known anyone except elderly people who got therapy. Through my work with All Kids Can, I recently learned that kids and teens with cancer, sickle cell disease and pediatric HIV/AIDS get these therapies, too, at the CVS Caremark Rehabilitation Services Center at St. Jude Children's Research Hospital in Memphis.

Kids with catastrophic diseases can develop developmental, cognitive or physical impairments from their illness, as well as the treatments used to save their lives. The hospital's staff of audiologists, occupational therapists, physical therapists and speech-language pathologists help some 75 patients every day; the hospital treats about 7800 kids every year.


Always interested in OT exercises, I asked the department to share what they do to help encourage fine-motor skills and all I can say is, I'm picking up clothespins this weekend!

• Pick up objects like blocks and cotton balls with tongs and move them from one container to another.
• Pick up small objects like beads with tweezers.
• Make snowflakes with paper.
• Put clothespins on the edge of boxes, rims of cans or on sheets up of paper, then take the clothespins off. Or use them to pin up clothes.
• "Clean" a surface with sprayer bottles or sponges.
• Play "paper flick basketball"—roll small pieces of paper into a ball and use a fingertip to flicks them at a target.
• Pop bubble wrap.
• Play with LEGOs.
• String beads of different sizes onto a shoelace.
• Make a macaroni necklace.
• Roll a pencil or marble between thumb and fingers without dropping it.

If you've been in a CVS lately, you probably know about the store's fundraiser to support the St. Jude Thanks & Giving campaign. Customers can add $1 or $3 to their purchase at registers, or donate $1 if they're checking out online. In recent years, the campaign has raised more than $31 million dollars to support the hospital's work. (Fact: It costs $1.8 million dollars a day to run the hospital, and families do not pay for anything, including treatment, care, travel and housing).

The campaign ends Saturday. I don't know about you, but I don't need much of a reason to head over to CVS—I find cruising the aisles seriously relaxing. But this? It's a Very Good Reason to drop by.

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


Image: Flickr/AshkanPhotography

Special Needs Blogger Weekend Link-Up: Hel-lo there!


'Tis the season to share your posts! It's another weekend link-up for bloggers with kids who have special needs.

The idea

Share a favorite post of the week.

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: Mommy Needs A Nap! SOS!

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Happy linking!

Thursday, December 6, 2012

The British Paraorchestra sings True Colors. LOVE.


This is a just-released video of The British Paraorchestra and The Kaos Signing Choir for Deaf & Hearing Children singing True Colors.

 
The orchestra's goal is "to create a platform for the best and most able musicians with disability to perform and excel at the highest level." British Paralympic athletes participated in this song. The Choir includes kids of all abilities, ages 4 to 18. Both groups sang in the closing ceremony of this summer's Paralympic Games. 

That mesmerizing electro-voice at the beginning and end of the track is Lyn Levett's, a music producer and tutor. She has cerebral palsy, and thanks to the miracles of tech can sing by operating her iPad with her nose. (Read more about the Paraorchestra musicians here.)

Proceeds from the sales of the single support the Paralympics GB team at the Sochi 2014 Winter games and benefit the Kaos Choir and the orchestra; you can download it for 99 cents at iTunes

How's that for holiday spirit.

How siblings feel about brothers and sisters with special needs: a reality check


"Maaa-aaaax," Sabrina says in a sing-song voice, "want me to have a magic show for you?" Sabrina's into doing tricks, and Max is a devoted one-man audience. She holds performances about once a week at bedtime, in Max's room. "Look, Max, I'm placing the little ball in the bag!" she says, pushing it deep into the folds of a purple silk pouch. "Look, Max, the ball is gone!" she says, one hand hiding a suspiciously bulging corner. Max grins. I have a feeling he's just humoring her.

Sabrina's magic show is amusing to Max—and thrilling to me. I love when she's super-nice to him. Like many siblings, Max and Sabrina fight a lot. Like many mothers, it drives me nuts. Now I know exactly how my own mom felt when my sister and I went at it. But unlike my mom, I have a nagging worry in the back of my mind: Will Sabrina be there for Max when Dave and I are gone? Will she be able to handle the responsibility? What resources will she have? Why oh why do we keep procrastinating having a third kid?

So it was interesting to read the results of the just-released Easter Seals Siblings Study, done in partnership with MassMutual. The organization did an in-depth surveys of 351 adults who have a sibling with a developmental or physical disability, and a parallel study with adults who did not have a sibling with disability. Some of the responses were heartening, some made me nervous. A few notable ones:

• Six in ten respondents are involved in the daily lives of their siblings with disability (less than three in ten other siblings say the same).
• About 80 percent say they have a close relationship with their sibling with a disability and that the relationship enhances their life (60 percent of the general public respondents felt the same).
• Nearly half say their parents house their sibling with a disability; 14 percent say their sibling lives with them, and 23 percent say they are already the primary caregiver—and that caring for their sibling is a full-time job.

Jennifer, the 2011 Easter Seals Adult Representative, with her older brother Tim

• Thirty percent of primary caregivers don't get emotional, physical or financial support from friends and family.
• Some 60 percent say having a sibling with special needs has a positive impact on their quality of life, teaching them patience, understanding, and compassion and giving them perspective.

Mary and her brother, Joseph

• Forty percent of respondents say their kids benefit from having an aunt or uncle with disability in their lives.
• Many siblings cited increased stress in caring for their sibling with disability; three-quarters of primary caregivers say sometimes their relationship with their sibling puts a strain on their family life.

Easter Seals plans to use the findings to better support families caring for someone with a disability, and raise more awareness of the challenges they face.

I know Sabrina is going to have serious responsibility resting on those sturdy shoulders of hers. Fretting about the future never does me any good, though (why my special needs mom blinders come in handy). This is a good reminder to sign her up for a SibShops program. I'll keep doing my best to nourish Max and Sabrina's relationship; help grow her understanding of what it means to have cerebral palsy and be the sis of a kid with special needs; separate them when they fight so they do not disfigure each other; and enjoy the magic when it happens.

Kyle, the Easter Seals 2011 Child Representative, with his sister, Julia

Wednesday, December 5, 2012

One way to get better service from the insurance company when you submit your child's therapies. Maybe.


I spent a good half hour on the phone a few weeks ago with a supervisor at our insurance company, going over claims whose status was unknown. As in, I had sent in dozens of claims for Max's speech, occupational and physical therapies in the last year or so and hadn't heard back on a bunch of them.

The supervisor never called back. I left her a voicemail in which I most definitely sounded frustrated and used language like "going to have to get an attorney involved." I called another supervisor I had once spoken with and left a voicemail, too. A couple of days later, I heard back. Some claims hadn't been "keyed in correctly" (whatever that means) and needed to be reprocessed.

WHY does it have to be this hard, I wondered? With our last insurance company, I had a dedicated person I could send claims to. This company, however, insists no such arrangement can be made, and so it's representative roulette every single time. In the time I've spent talking with reps or waiting on hold to speak with a rep, I could have earned a PhD in microbiology, or something like that.

Yesterday I sent in a new batch of claims, and for good measure I added a special cover letter. Who knows if it'll help, but it sure couldn't hurt. Here it is; I refrained from sealing it with a lipstick kiss.

To Whom It May Concern,

Hello. This is Ellen Seidman, mother of Max, for whom I am submitting the attached medical claims.

Imagine this for a second: You are the parent of a child with special needs. You have many extra responsibilities on your hands, including coordinating his education plan, shuttling him to doctor appointments, coordinating his therapies and finding activities that engage him developmentally and intellectually. Then there’s all the hands-on help a child with special needs requires, everything from help with feeding to making sure he gets bathed safely and thoroughly.

Now imagine that in addition to all of the above, you are forced to spend hours on the phone with the insurance company, tracking down claims that have either not been keyed in correctly or that got lost in the system. This might cause you extra stress in your life. It would certainly take away time you could be spending helping your child.

I am that parent. And I am asking you to please do your best to process this claim correctly, so that I will not be forced to make yet another call to the insurance company.

It would be a great help to me. It would be an even greater help to my son.

Thank you so much for your consideration.

Sincerely,

Ellen Seidman

cc: God

[OK, I didn't actually cc God but in retrospect I probably should have.]
[Or maybe I should have cc'd someone like President Obama, because they sure wouldn't want to risk putting The President of The United States on hold for twenty minutes when he called to complain on my behalf, right?]
[Or maybe Justin Bieber? Because he might impress the rep reading the mail?]
[And I for real should have cc'd my mother, because if she got wind of how the insurance company has been treating me, they'd be in BIG trouble.]
[Perhaps next time I will just send something short and sweet like PAY THE CLAIMS OR SUFFER THE CONSEQUENCES, using letters cut out from magazines so it has that powerful ransom-note effect.]
[I think spending too much time on hold listening to Muzak has maybe made me a little loopy. Where do I put in a claim for that?]
[How many insurance reps does it take to pay a claim? Four. One to lose the original claim, one to process the new claim, one to reprocess the claim when the strokes are keyed in wrong, and one to screw in the lightbulb so they can see what they are doing! HA HA HA HA HA HA HA!]
[I'm done now.]