Live Video: Kristina DeAndrade - Achondroplasia

1
1

The Night Before: Kristen DeAndrade was born with achondroplasia (a form of dwarfism) and will be going into knee and ankle realignment surgery tomorrow. She’s appeared on several national television networks and and shares the details of her life in this video.

1
1
TOPICS
Live Video
JOIN THE CONVERSATION

Kristen DeAndrade Has 'Tiny Legs and a Big Heart'

5
5

Kristen DeAndrade's cover

Kristen DeAndrade’s mantra is “little legs, big heart.” It’s a mantra that’s been shaped by the 30-year-old’s life with achondroplasia, the most common form of dwarfism. “There is always going to be someone, somewhere who has something to say, ” DeAndrade said. “Even if I was pressured, it’s physically impossible for me to have another body type.”

DeAndrade views her body as a canvas reflecting her medical journey. “I’m not afraid to show the evidence of what I have been through,” she said. “It isn’t something I think twice about.” For DeAndrade, strengthening her self-worth has made it easier to drown out any unwanted opinions she may hear. “I don’t walk around reminding myself I am a woman with dwarfism who has an extensive surgical history,” she explained. “I’m Kristen. A woman with little legs and a big heart, lover of hugs and laughter, unafraid to show her sassy side.”

This summer holds significant importance to DeAndrade, who lives in Charleston, South Carolina. On May 2, DeAndrade underwent spinal surgery to reverse damage to her spinal cord due to spinal stenosis, a condition common among those living with dwarfism. “Hearing my surgeon describe how severe my spinal injury actually was – losing all motor function on the operating table and facing the possibility of living the rest of my life in a wheelchair – those words were a blow to my heart,” she said. “As a result I have been offered more perspective. This summer, more than ever before, I am grateful to be standing and moving on my own two legs.”

Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines

Next: Bekah Georgy Shares What Dressing for Summer With an Eating Disorder Is Like

5
5
TOPICS
, Photo story
JOIN THE CONVERSATION

To the Mother Whose Child Doesn't Like Mine

1k
1k

I’ve lived in a nearly perfect world for almost two years. My daughter, whose diagnosis (achondroplasia) is becoming more and more apparent, generally elicits only the kindest of remarks from strangers who recognize a difference (the difference being disproportionately short arms and legs, and a larger-than-average head size). I am almost overwhelmed by how many people tell her what a doll she is, or ask me about the condition.

Naomi holding a marker

I say “nearly” because there is always something that threatens our safe and happy bubble. At 22 months, Naomi doesn’t appear to recognize these things, but I do. The sticker on the back of the pickup that reads “I HEART MIDGETS,” the occasional reference to “dwarf-tossing” or anything relegating the value of little people to sideshow entertainment. It always hurts, but the positive experiences we’ve had, as well as the outpour of love and support from our community of family and friends, has generally eclipsed these negative instances. Except for one. And this one is a work in progress.

Naomi attends an hour-long physical therapy session once a week in a center that also boasts speech and language as well as occupational therapy services. One 3-year-old, E, whose speech session is at the same time as our PT appointment, has walked in every Tuesday, for almost three months, told his mother how much he dislikes that baby (my baby).

It started simply: “Mom, I don’t yike that baby” but gradually progressed into something more targeted: “Mom, I don’t want to go near that baby because I don’t yike how that baby yooks,” to the current dance of his hiding behind the wall, telling his mother: “I don’t want that baby yooking at me.”

Now, he is a child, I know. But here’s the thing: children are honest and have no filter between what is in their heart and what comes out of their mouth. He doesn’t like my daughter, and from what I observe, it has only to do with how she looks. His mother disagrees. She has only offered one comment to me in roughly 12 visits, and that was this: “He hates all babies, not just yours.” (Thank goodness?) Maybe she’s being truthful. Maybe he dislikes all babies. But the way his mother wouldn’t look me or my daughter in the eye when she said this tells me differently. Not to mention the fact he refrains from commenting on other “babies” who wait in the lobby. She’s covering for him, and by extension, herself.

Over the course of three months, I’ve mentally combatted this 3-year-old’s insults:

“She doesn’t like you either.”

“Well, I don’t like you.”

I’ve also given his mother an earful (in my head, of course):

“You must not be a very good parent to have a child who is already a bigot.”

“My daughter loves everyone… except your awful son.”

The fact that I am a coward who hates confrontation isn’t the reason I haven’t spoken up. In fact, one thing motherhood has given me is the ability to stand up for my child, even when fear tells me not to.

But I’ve kept quiet for two reasons:

1. I am ashamed of some of the things I’ve wanted to say. In the end, he is a child who is battling his own challenges, and a targeted comeback would only find me guilty of the same offense against my own child. We are at a therapy center! Lose-Lose.

2. I’m not confident my comebacks would accomplish anything. At this point, their actions and words hurt, and until I can remove myself and be content in knowing this is their problem, and not ours, I fear my words may only fuel their ignorance.

As parents, we are teaching our children by example, and I want Naomi to know the power of being able to shake things off, even if you have to fake it for a while. E’s mother knows my daughter is different, and shame on her for not using our weekly interaction to her advantage, to teach about others with developmental disabilities, invisible or obvious. To widen his perspective at a young age. To foster compassion and replace fear with understanding. I hope my silence allows her to reflect on these things. And when I am ready to say something, I pray my words are graceful and informative, devoid of snark or defense.

naomi smiling

I’ve enjoyed my almost two years of a nearly perfect world, but in reality, it is experiences like these that will shape my daughter and myself and cause us to grow. I hope my example is the right one and that I make the majority of my inevitable mistakes before she is old enough to notice, so in the future, when she encounters someone who dislikes her for what she was born with and I’m not around, she knows in her heart whether it is an opportunity to educate or to simply ignore. Because even though she may always be the smaller one, I pray she’ll always be the bigger person.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. Check out our Submit a Story page for more about our submission guidelines.

1k
1k
JOIN THE CONVERSATION

How I Feel About the Potential 'Cures' for My Dwarfism

1k
1k

For decades, people in the medical profession have tried to think of ways to make me taller. The latest thing I’ve heard about is the potential for a drug that can be injected every day.

I’m 37 years old and married with two wonderful children. Our eldest daughter is 5 years old and has inherited our achondroplasia, something that we’re bringing her up to be very proud of, as we know her future is quite bright. Our 2-year-old is average height, and we’re so excited for her future and the privilege she has of growing up in such a diverse community.

Our 5-year-old is excelling at school and has a very active social life that’s hard to keep up with as a busy mom. So far she has minimal medical issues. Both my husband and I are healthy, active parents who barely remember our achondroplasia. It’s only other people who like to remind us — either through the occasional inquisitive stare on the street or medical advancements that presume we may not be living a fulfilled life.

But there’s nothing I would change about my achondroplasia. It’s been part of my destiny and I’m very proud to belong to a culture where we can mix with diverse families and learn and laugh together.

In context, my life has been ordinary. I went to university, spent time on a kibbutz, traveled around the world and had a career as a researcher at the BBC. I’m now training to be a teacher; I teach sixth form media studies, and every day I’m surprised at how little the students notice or care about my height. We’re active members of our local community and both girls enjoy the local school, nursery and various clubs. It’s this community that makes me forget my height; I’m “the girls’ mom” when they bump into me in the village.

Every morning my 5-year-old scoots from our house to school. I watch with excitement and pride as she passes her friends exchanging hellos and giddiness about their day. I stand in the playground chatting with the moms and kiss her goodbye as she enters into a classroom full of acceptance and general nonchalance about the fact she’s at least a head shorter than her friends. I’m aware that at times her height may be questioned, but I hope we’re providing both our children with the confidence and inner happiness to answer any questions about themselves or their family with pride, politeness and an understanding that people are inquisitive.

So what’s my answer to the presumption that a drug will improve my life? I’m OK, thanks. In fact, I’m more than OK. Life is great and that is partly to do with me being born with a condition that makes me shorter. Life is not limited or full of endless pain; my GP barely recognizes me. I’m aware there may be medical issues that pop up in our family. However, it’s part of our route and may be a bit of a diversion, but it will not stop us getting to where we want.

I wouldn’t exchange this journey for any promise of being taller. I ask instead that we put our energy into creating awareness that being different isn’t a big deal. It’s not our family that needs to change — what needs to change are attitudes and presumptions toward people with difference.

Follow this journey on Me and My Girl.

The Mighty is asking the following: What’s a moment related to your disability and/or disease that made you laugh, roll your eyes, cry or was otherwise unforgettable? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

1k
1k
JOIN THE CONVERSATION

When My Son With Autism Wandered Into the Middle of the Street

209
209

Two minutes. That’s all the time it took. We were distracted for two minutes and he was gone.

Our favorite babysitter, Maura, the daughter of an old family friend, was just home from college and my mom and I were welcoming her back. We were telling her how excited we were to have her home for the summer to help out with watching my son, Max, and my daughter, Stevie. She had just walked in the door. We were hugging and talking for two minutes. We turned around and he was gone.

It was mid-May and finally warming up in northern Ohio after a long, cold winter. All Cleveland kids were busting at the seams to get outside to play. We had walked the bike path to the park a few times already this season, and apparently, Max decided to make the trek all by himself. But instead of staying on the path, he was walking down the middle of the street to the park. It’s a four-lane divided road and pretty much the main drag in our hometown. He was 7 at the time.

We’ve all heard stories like this in the autism community. Especially in the summer and always surrounding holidays like the Fourth of July.  This week alone, I’ve read eight accounts of children on the spectrum who are currently missing. It’s a weekend, a holiday, a different schedule, family is visiting or there’s a barbecue going on in your backyard. Whatever the reason is, we get distracted. Parents don’t have eyes in the back of our head, and kids like Max can be slippery. He doesn’t spontaneously talk very much. He didn’t say a word and somehow slipped outside when we weren’t looking.

And I’m sorry to say, but this has happened more than once. There have been many “almost” incidents when Max escaped from me and went outside alone. Once I was running around my yard like a lunatic shouting his name with my phone in hand ready to call the local police. He was sitting in the car. It’s a good thing I have understanding neighbors.

We’ve instituted many, many safety measures to secure our home and Max since these occurrences. Safety locks for the doors, window alarms, seatbelt buckle protectors, because, yes, he’s even tried to flee from inside the car — while I was driving it! 

Thanks to my friend, Brittni, who works as an intervention specialist and a swim instructor, Max learned to swim at a young age. Since then I have not feared, as so many families do, that Max could wander and drown in a body of water. I do, however, fear he will again quietly slip out a door and make his way down a street. Max seems to have no fear of traffic. We’re working with him on crossing the street and waiting for cars, but he has yet to grasp the concept.

Through a wonderful camp that teaches kids with disabilities to ride two-wheel bikes, Max learned to ride this summer. It has given him confidence and a feeling of independence. As an almost-10-year-old, his desire for independence continues to grow, as it should with every boy his age. However, I fear as he gets older and wants even more independence, these situations may continue to arise.

When he was 7 and tried to take that walk to the park, we were lucky. My friend, William, just happened to be driving down the street on his way home from work and saw Max taking his stroll. He pulled over and scooped him up in his car and brought him back to me. We’re lucky William saw him and not some stranger. We’re lucky the cars that passed him didn’t hit him. We’re lucky he didn’t bolt into an oncoming car.

When she was the first lady, Hillary Rodham Clinton wrote a book called “It Takes a Village.” The title was based on this African proverb: “It takes a village to raise a child.” Autism families can attest to that indeed. My helpers are pretty darn solid, and I live in a village of tremendous neighbors with a fellow autism mommy just two doors down from me.

So far we’ve been lucky, but I don’t want our luck to run out someday. I’ve been researching the plethora of new personal tracking devices that have hit the market recently to figure out the best one to keep Max safe and to prevent a wandering incident. The process is overwhelming as the choices seem endless.

I’ve heard good things about SafetyNet by Lojack and Care Trak, which networks with your local police, but I was hoping to keep it simple. I want something that alerts me or his caregiver if he goes beyond a certain boundary: the yard, the playground, 500 feet away. A few other moms recommended AngelSense, PocketFinder and TrackR, which all track through a GPS app on a smart phone. I’d love to hear what The Mighty readers out there are using and hear how it’s helping to safeguard their family members.

Maureen Crotty the mighty.1

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

209
209
TOPICS
JOIN THE CONVERSATION

Dear Autism Parents, I Don’t Know Your Story, but I Know You Need This

2k
2k

Dear Autism Parent,

Having a child with autism myself, I imagine this road hasn’t always been easy. It’s a road that often can’t be fathomed unless there are fellow travelers.

But traveling the same road is not the equivalent to having the same journey. I can’t begin to know what your days, hours, minutes and seconds are like. Autism may be the line that connects our dots, but our challenges and how we persevere changes the dynamic a bit and causes our stories to differ.

I can speak about my child and the successes, the falls, the fears, the dedication, the bottomless pits and the brighter days. I have four sons overall. It can be challenging to care for all four, especially when the needs of one of them are more. So I don’t know what it’s like to walk in your shoes. I can’t tell your story.

But what I can tell you is parents with children with autism need support. We need encouragement. We need to feel like we’re not failing even though signs of improvement are nowhere in sight. We need someone to listen and not feel like they have all the answers. We need someone to care and someone who “gets it.” No explanation needed. No judgment. Just someone who understands.

Well, I get it! And without ever meeting you, I applaud you for being a remarkable parent. Your strength, courage and tenacity are to be admired. And yes, every mom and dad should step up to the plate because that’s what you do when you’re a parent.

However, sometimes the reality can be too great, and some may find it easier to walk away. Optimism can be hard to find when the days and nights intertwine.

So on behalf of your child, thank you for staying. I know it’s tough. I don’t think any journey is meant to be a piece of cake, no matter how hard we pray for it to be. Nevertheless, this walk we take makes us stronger and more determined to make sure the needs of our children are met.

This doesn’t mean your strength won’t be depleted during your journey. You may even have a meltdown yourself from time to time. But don’t ever think your work is in vain. Don’t think your words are empty. Don’t think you’re not being effective. And please do not think that hope is lost.

The fact that your children are still here has so much to do with you loving them, believing in them and never giving up on them. The truth of the matter is no one can do what you do and get the kind of results that have professionals scratching their heads in disbelief.

No one is more dependable, no one is a better advocate and no one knows your child better than you. Although exhaustion, fear, confusion and, at times, discouragement may encompass you daily, look at your child and know this fight for accommodations, for quality of life and for just getting through the day are beyond worth it.

I’m here to give you this: A high-five, a pat on the back and a thumbs up. You’re doing a great job! The possibilities are endless, and my hope and prayer for you is that you find acceptance, progress, achievements, miracles and much strength and appreciation along the way.

From the heart of one autism parent to another,

Portia

Portia Dawson the mighty.2-001

 The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

2k
2k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.