Naomi holding a marker

To the Mother Whose Child Doesn't Like Mine

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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.

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

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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.

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

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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.

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

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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.

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As a Mom of a Son With Special Needs, I Beg You to Have ‘the Talk’

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This summer is the first summer Baker has been 3.

Silliest of statements, I know. Of course this summer is the first summer Baker has been 3. Hear me out.

Three-year-olds get to play with the big kids. Three-year-olds are no longer considered babies and given the grace babies are given.

Babies are allowed to sit quietly. Babies are allowed to keep to themselves. Babies are allowed to play in their own safe area.

There are no expectations surrounding play with babies, except that babies will be babies. Babies do what babies do.

Last summer, and the summer before, and the summer before that, Baker was a baby. This summer is the first summer Baker has been 3.

This summer is the first summer Baker has played with the big kids.

This summer is the first summer Baker’s play has been laden with expectations of looking and sounding a certain way.

This summer is the first summer Baker has been noticed as different.

Before, Baker could sit on the sidelines. He could bounce on my lap and giggle and coo to everyone’s delight.

Before, Baker was a baby. Before, it was OK Baker could not talk, could not run as quickly, could not jump as high.

Before, none of the other kids saw Baker any differently than they saw their baby sister or little cousin. He was a baby (and a darn cute one). He did what babies did. Because of his different abilities, some of it came at a slower rate and took much greater effort. His hypotonia caused his chubby little legs to frog out when he slept and his little body to collapse into mine, winning him all the awards for world’s greatest snuggler. He was a baby, and everybody loves a baby. Especially Baby Baker.

This summer is the first summer Baker has been 3. And because of that, this is the first summer our little sphere has been expanded. And because of that, two things have happened to this momma’s heart: it has experienced both unspeakable joy and unspeakable ache.

My heart has threatened to overflow watching Baker create new friendships. I’ve been so encouraged listening to other mommas enlighten and empower their children with knowledge about Down syndrome as questions have presented themselves about why Baker’s play and talk differ from their own. I’ve loved watching the innocence of children, as they love with their whole heart, without judgment and with unhindered acceptance.

My heart has also threatened to shatter into pieces as I see other children notice Baker’s different abilities. “Is he special ed?” one asked innocently. Others can’t understand his fascination with perfectly folding all of our beach towels instead of bounding down the slide like all the other children. Why, when their conversations flowed as easily as lemonade on a summer day, did Baker prefer silence? Why, when he does speak, does he often do so first with his hands and then with words that sound so differently than our own? Why does he often drift to the perimeter when all of the action is in the center?

Why is he different than me?

Could you answer that question?

Little more than three years ago, I would have stuttered through it, preferring to brush it under the doormat or opting to combat it with the eye that commanded silence instead of opening doors to a conversation of acceptance.

As the mom of a seriously great kid, who happens to have unique needs, I beg you to have the talk. The talk about likes and differences, and how often we’re more alike than different.

If you need a name, use Baker. If you need a face, I think his is pretty perfect. If you need words, use a picture book (spoken like a true teacher, ha!). I love “We’ll Paint the Octopus Red.”

Your children won’t mind if the words aren’t perfect or eloquent or include textbook terminology. They can be simple and succinct and from the heart.

From the bottom of mine, thank you.

More than you know, thank you.

Photo credit: Katie Thompson Photography

Follow this journey on Our Dream Come True.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

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I Wish I Opened Up to the Flight Attendant About My Invisible Illness

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Due to my chronic disabling condition, Ehlers-Danlos syndrome (EDS), I’m used to getting bad looks or comments from people who do not understand why someone who looks so fine can be this sick.

But this experience was something else… In a moment when I actually expected to be treated with respect and understanding, I was met with more ignorance than all the years before.

I am living with EDS and a very unstable cervical spine, which is a huge problem if you have to travel alone. Cervical instabilities can affect the whole body. In my case, I had a hard time with walking longer distances, blurred vision and numbness and weakness in my arms. I’m not allowed to lift anything, and I’m supposed to walk with caution.

All my diseases led to the decision that I needed to see some specialists in another country. I was more than scared to fly alone with a lot of luggage, but I was told by the airline I would get the help I need without any problem.

I’m not a person who lets anyone see how I feel. I used to hide my pain and problems behind a smile, and I try to be as mobile as I can. But this time it was different. This time I really had to take a helping hand if I wanted to get off this plane without being bedridden for the next few weeks. I couldn’t just push through my symptoms as I used to do before. I booked a wheelchair and told everyone I couldn’t lift my carry-on luggage.

As you can imagine, people looked confused, and sometimes I heard them whispering bad things when they saw me, a young woman in her 20s, get out of the wheelchair and walk to her seat after I was brought to the gate. A lot of people don’t understand you can still use your legs but need a wheelchair anyway. I know I shouldn’t feel embarrassed, but I always do. It’s hard for me because sometimes people make you believe you’re just lazy and actually don’t need this help.

At the gate, I wanted to make sure I was allowed to preboard and the crew knew I needed help to store my carry-on. I was told if I really need to preboard, that’s OK, and they could also check in my carry-on. I tried to explain it’s not possible because I had all my braces and medication in my carry-on in case I needed them during the flight. These items are expensive and I can’t lose them.

When the flight landed, I asked again if someone could assist me with my carry-on luggage and I, for the first time, experienced the ignorance of someone who was supposed to help without judging me. When I asked a crew member to support me and lift my luggage for me, she told me if I was not able to lift my luggage by myself, I should leave it at home the next time.

This one sentence made me not only sad, but it also left me feeling like I maybe don’t need the help. Maybe someone else is worse off than me and needs it more? Instead of telling her she’s not in a position to judge me, I left and carried my luggage alone.

One week after, my body still struggles with the consequences. I probably should stop pretending that I’m fine so everyone can see my pain. But that’s just not how or who I am.

I wish I’d told her that long-distance flights feels like torture to me, that all my joints hurt, that my legs went numb from sitting on the hard seats (even with my seat cushion), that I couldn’t sleep because I cannot allow my cervical spine to relax while I’m sitting upright. I wish she would’ve recognized my neck brace and that it’s there for a good reason. I wish she knew how scared I always am if I have to fly by myself.

I wish I’d just stop pretending I’m fine and tell people how I really feel. I wish I’d told her how hard it is with an invisible illness like Ehlers-Danlos syndrome.

Nobody should judge someone just because they look fine. They might be in a lot of pain or are just too proud to show their pain. Maybe the crew member was just having a bad day. Maybe she was hiding something, too, and I didn’t notice it. Maybe I should have asked her if she was OK.

The Mighty is asking the following: Describe a moment you were met with 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. 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.

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