The Mom I Would Have Been

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Yesterday I met a friend for coffee. We each had our babies in tow (both little guys, 6 months old and 10 weeks old), and our big girls were at school. Both of our older children have special needs, and the conversation ebbed and flowed from special needs school stress to sleep schedules for new babies. As our visit ended, she mentioned getting a group together of moms with little ones, since it can be isolating to be at home with a baby.

Something in me clenched. I hesitated to say yes, without knowing why. And then it clicked: here I am, starting again. This time with a different child, one unencumbered by differences and appointments… with him I am just a typical mom. An average mom of an average baby with universal “problems” (nap schedules, pacifier addictions). A mom who can watch other babies crawl around and pick up toys and think, “Oh I can’t wait for that,” instead of, “Oh… should that be happening already? I guess we’re late on that one, too.” The mom that I would have been, if things with Maya hadn’t been so different.

And it made me realize that parents of children with special needs suffer a double loss. The first, the one most often discussed, is the loss of the-child-that-you-imagined… the loss of future dreams that might not happen (college? who knows), the loss of skills that you thought would be a given (stairs? maybe someday), the loss of health that people take for granted (I would list specialists here, but I don’t have space for another paragraph).

But the second loss, you don’t hear as much about. It’s more personal than the loss of the child you thought that you’d have… it’s the loss of the parent that you thought you would be. Where the-loss-of-the-child-you-would-have-had says, “I wish that my child could play catch with me,” the-loss-of-the-parent-you-would-have-been says, “I wish that I could play catch with my child.”

While I’ve shed a lot of tears over the past four years, I’m not sure that I ever realized that some were for Maya and some were for me. But now that it’s come to mind, I’m going to sit with it long enough to mourn the mom that I would have been.

I would have been a mom who took her baby to music class and clapped and played happily, without the little clench in my stomach as I wondered if the other moms and nannies were wondering why my baby couldn’t sit unassisted or clap or crawl like the other babies could.

I would have taken pictures of my baby’s comically messy attempts at self-feeding and scolded her for throwing food on the floor… instead of giving bottles for years, doing countless oral motor exercises and battling to get food in and swallowed, sometimes through mutual tears.

I would have had time for more playground trips or coffee dates with other moms and little ones… instead of being trapped at home by our tight schedule of feeding-therapy-nap-feeding-therapy-nap-feeding-bed.

I would have set my girl loose at the playground gate and sat down to enjoy a moment to myself, watching her run and climb but giving her some space to be independent… instead of guiding her safely to the equipment, positioning her feet and hands and prompting her to step-and-pull-step-and-pull.

I would have watched her run up to other kids and start playing, and wondered what they were talking about . . .  instead of holding my breath when she approaches age-appropriate peers, wondering if they will shun her, if she will notice, and how I should react.

I would have yelled after her to be careful as she took off running with friends… instead of watching her giggle as children run past her so quickly that she doesn’t have a chance in hell of keeping up (and so I laugh with her and say, “Wow! They’re fast!” and pretend that watching them and laughing is just as much fun as running around).

I would have reminded her to use kind words while playing… instead of standing behind her and translating her noises and gestures for other kids.

I would have met and chatted with other moms, making small talk about the kids and preschool and playdates… instead of shying away because I didn’t want to talk about our life of doctors and therapies with them, I didn’t want pity, and I didn’t want to make them uncomfortable.

I would have taken her on more fun outings… instead of taking her to so many specialists.

I would have gone to birthday parties and socialized with other parents… instead of dreading the moment when I walk into the room full of same-aged children and think, “Oh my God, that’s what 2 years old is supposed to be like?”

I would have played with her and thought about playing or maybe let my mind wander to other things (errands or what’s on TV tonight)… instead of thinking about therapy goals and how to position the toys and then move her legs just so, even though it-hurts-a-little-but-it’s-just-for-a-minute-I-promise.

I would have walked her to preschool in the neighborhood, meeting local moms and chatting outside… instead of loading my tiny, nonverbal 3-year-old onto a bus to ride to a special needs preschool downtown, then walking up to my apartment and worrying about the long ride and hoping that the matron would be nice and take care of her if she was tired or sad.

I would walk with my girl or sit in a coffee shop with her or take her shopping and pay attention to her and talk with her and never give a single thought to if people were looking at her or wondering about us or staring.

I would talk with her and enjoy the often humorous observations of a toddler/preschooler… instead of spending (literally) countless hours researching, developing and teaching a variety of communication systems, each time hoping that she would be able to learn how to say more things and that I could get a glimpse of what she thinks about.

Parenting would have been a much easier job… but, then again, I wouldn’t have appreciated it.

I would have lamented over seasonal colds and illnesses, saying things like, “We just can’t catch a break!” when we were hit with a few in a row… instead of knowing that we were kind of catching a break the whole time by not having any larger issues to deal with.

I would have celebrated milestone moments with enthusiasm and pride but lost the magic of those milestones quickly… instead of marveling at the unbelievable motor feats involved with something like sitting up unassisted or jumping. (Seriously — jumping — did you ever think about how crazy it is? Somehow you just will yourself up into the air and your legs make it happen. Unbelievable.)

I would have complained about the hard work of progress — potty training woes, a willful child who dresses themselves in mismatched or seasonally inappropriate clothing, a kid who jumps off furniture or climbs onto countertops… instead of recognizing the feats of strength and coordination and development that underly each one of those things.

I wish that I could have been that other mom with Maya. We would have had a ton of fun, I think, the Maya-that-she-would-have-been and the mom-that-I-would-have-been. But I certainly love the Maya-that-she-is… and without her, I wouldn’t have become the kind of mom that she needed, a mom better than the mom that I would have been.

The mom that I didn’t know I could be.

The author with her daughter.

This post originally appeared on Uncommon Sense.

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I Couldn't Find a 'Back to School' Ad That Included Kids With Disabilities... So I Made My Own

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A month ago as I was driving across state borders with my children, I felt butterflies in my stomach as thoughts of lunch boxes, school clothing and shoes were flashing through my mind. All the anxiety of a new school year, school supplies and to do lists were creeping in. I then thought about the children who learn differently or have a different ability than the rest of the school children and the worry those children and their parents must be feeling as they begin to prepare for yet another year.

We all know how it feels to be standing in our local shopping mall or surfing our favorite boutique online while asking ourselves what product, sweater, coat or pair of shoes will help our child fit in just a little better this year. This is a concern for all of us. We all want our children to stand out in a positive way. We want them to be recognized for their strengths. We definitely do not want our child to be “that child.” You are following me, right?

My stomach is turning just typing this out. It is tough to talk about even the possibility of our child or any child being “that child.” The one who is not noticed in the hallway, the one that has no one to sit by at lunch. The one that children are scared of. “That child.”

Although there are many great stories of children with different abilities  having successful school careers there are that many more of children who fall into the category of “that child.” As I thought about this of course my mind went directly to our advertising world. What are we communicating to our new students and parents each year? What are we looking at as we scroll through websites searching for the perfect first day of school outfit?

Well, I ran a search in my email. Just a “Back to School” search and because I am a professional online shopper, I knew I would pull up at least 20 “Back to School” ads that were directly emailed to me. So I scrolled through the beautiful imagery and you know what? I didn’t see anyone that resembled my daughter. Not one model in close to 50 ads included one child with a disability. Not one.

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Am I mad? No. Were conscious decisions made while casting the models to represent these back to school brands? YES! We need a blonde, brown and red haired child. We need a boy and girl. We need a minority. But you know what? They need a child with a disability too. It doesn’t matter what disability, but they need to represent the largest minority in the world. We need to see a child with Down syndrome or a child who needs help walking or uses a wheelchair. We need children that represent differences. I firmly believe that the thought of using a child with a disability never even made it to the table. Never even entered the planning conversation. They were forgotten.

Our media and advertising defines what is important in our world. They dictate who looks good, hair styles and the most fashionable shoes.  They are the ones who give us the heads up when skinny jeans are the way to go. They tell our youth who matters.

So where am I going with this piece?  I did just that! I casted my own models, and I too made conscious decisions when deciding who would be a good fit for my own back to school images. When given the opportunity children blend together perfectly. The exciting part was reaching out to children’s clothing lines. I am extremely thankful to RUUMSEAM CollectionCHOOZEThe Good Ones and Tea Collection for believing in my idea. They partnered with me and clothed these gorgeous kids to show the world how amazing all kids of all abilities look when captured together!

Go ahead and judge for yourself!

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Here is a little behind the scenes action. This video shows you that there really isn’t anything extra needed to include children of all abilities. They just need the opportunity.

So as we enter the 2014-15 school year think about all the children returning to school. Choose brands as you are shopping that believe in the same things you do. You have a choice and the only way advertising changes is if you show them what is important to you. Talk about differences and encourage your child to go the extra mile. Ask them to be the one who encourages a child who is feeling defeated, to lend a hand when a classmate is struggling and to make a friend with a peer who doesn’t have any. Let’s make this year about working together, building each other up and sharing in the celebration of learning! Isn’t this what advertising should be about?

Encourage our children to #BeUrAmazingSelf and to #choosekind.

OX Katie

This post originally appeared on 5 Boys + 1 Girl = 6.

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Model Strips Down, Reveals His Disability: 'I Want People to See It'

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Scope, an organization in the U.K. that advocates for people with disabilities, wants you to take your clothes off — to donate, of course.

With its #StripForScope summer campaign, Scope collected more than 1 million articles of clothing in July to raise money and awareness for people with disabilities. Helping the cause was Jack Eyers, a personal trainer and fitness model who stripped down in the Scope advertisement below, spoofing a famous Levi’s jeans commercial.

Eyers, 25, was born with a rare condition called Proximal Femoral Focal Deficiency, which affects his limbs’ growth. Because of this, he had his right leg amputated when he was 16 years old, The Mirror reported. At the time, he felt like he had no role models with disabilities to look up to. Now, he’s filling that void for other people.

“In the Scope ad I play a guy who takes a charity appeal a bit far. It was fun. The false leg has made me stronger,” Eyers told The Mirror. “I’m determined to show disability needn’t stop you living a normal life.”

I’m actually now more self-conscious when I wear trousers than when I wear shorts. I’m always wearing shorts,” he later told the BBC. “I want people to see it. It’s part of me. I show it off now.”

Watch Eyers in his #StripForScope commercial below:

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Man Who Received Full Face Transplant Opens Up to GQ Magazine

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When Richard Norris accidentally shot himself in the face in 1997, he was worried that no one would want to look at him ever again. Now, after a bold face transplant surgery, he’s being featured in GQ magazine’s August issue.

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Photo by Dan Winters/GQ

Norris, 39, spent nearly a decade in seclusion living with his parents in Virginia, according to the magazine. He took meals alone in his bedroom and wore a mask on the rare occasion he ever left the house. His family even covered up mirrors in their home to ensure he wouldn’t have to see his own reflection.

In 2012, a team of physicians led by Dr. Eduardo Rodriguez connected with Norris and offered to do a complete face transplant to help him regain the quality of life he had before the accident.

The 36-hour surgery took the face of a recently deceased 21-year-old and grafted it onto Norris’ repaired face structure. Rodriguez said that it was the most extensive of all face transplants ever performed, according to The Telegraph. Today, Norris is still learning to adapt to his new face.

Read GQ’s in-depth story on Norris here.

“A drop of hope can create an ocean,” Norris says in the feature. “But a bucket of faith can create an entire world.”

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3D Printing Technology Allows 6-Year-Old to Give Mom His First ‘Real Hug’

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Alex Pring was born without most of his right arm. But thanks to the latest in 3D printing technology, the 6-year-old boy was recently able to give his mother a two-handed hug.

With the help of an engineer at the University of Central Florida, Alex is now the proud owner of the world’s first 3D-printed myoelectric prosthetic arm. According to UCF, one of the first things Alex did with his new limb was run and give his mother what he called his first “real hug.”

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Photo by Kt Crabb Photography
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His arm was designed by Albert Manero, an engineering doctoral student who connected with Alex’s mother through E-Nable, a volunteer group that specializes in 3D-printed prosthetic limbs.

The device responds to Alex’s muscle movement, closing the hand when he flexes his bicep. Similar prosthetic devices can cost about $40,000, according to 3D Print. Manero and his team were able to design and manufacture Alex’s arm for $350.

“If we can do this for $350 in just eight weeks I’m sure that we’re going to keep pioneering,” Manero told ABC World News. “I hope people are upset. These arms should not cost $40,000.”

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To fix this problem, Manero plans to upload the design files and instructions to Thingiverse, allowing anyone to download and print their very own arm. Hopefully, this will lead to more “first hugs.”

“When he hugged me with two hands, he just didn’t let go,” Alex’s mom, Alyson Pring later told The Orlando Sentinel, adding that she hopes it will help her son “see future possibilities and make them seem all the more reachable.”

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Photo by Kt Crabb Photography

All photos by Kt Crabb Photography.

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As Long as He’s Happy

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“As long as he’s happy, that’s all that matters,” people like to tell me about Max. A man said it to me at the fair we were at yesterday.

And Max was happy, as he often is. There were fire trucks there and a chance to use an actual fire hose.

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There were train rides and car rides, a mini roller coaster he liked to just watch.

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There was a talking robot named Max who said, “Hi, Fireman Max” in his robo-voice, and I think Max may have accidentally touched his robo-privates, but I’m not sure.

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There were animals to feed. (Hot tip: Donkeys vastly prefer the grass you can rip up outside the tent, free, over the cup o’ feed you pay for.)

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There were games to play and yellow, pink and blue (blue!) lemonade and ice-cream. Heck, most kids at the fair seemed happy. Max was no different.

People only mean well when they say all that matters is that Max is happy. I know that. And yet, it gives me pause and a twinge of sadness. Because it implies that Max may not be capable of much of anything beyond bliss. Oh, but he is, and those who are close to him know it. And I hope the future holds a lot more than happiness for Max, as I’ve said here before: a relationship, a job he loves, experiencing all that life has to offer.

Yesterday, after the guy manning the ride said, “As long as he’s happy, that’s all that matters!” I nodded, as I usually do. I kept thinking about what he’d said as I watched Max stand in front of a band that was playing on a stage, grinning. A few minutes later, he said he was thirsty, and I helped him drink blue lemonade and he said, “Ahhh.”

And I thought, standing there in the heat as the boppy music played and kids danced: Max is happy. And while it’s not all that matters to me, it’s what’s important for him.

I often do that, as his mom — I project my wishes and dreams onto him. And probably that will never stop, but it would do my heart good to be glad for his happiness alone and not consider it something that needs to be topped. Max will be so, so lucky if he always has that happiness, whatever else the future holds for him.

Just another step forward in my development as a parent.

This post originally appeared on Love That Max.
Read more from Ellen Seidman:

• Let It Go, Like You’ve Never Heard It Sung
• A Bill of Rights for Parents of Kids With Special Needs 

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