To the Doctor Who Diagnosed My Daughter

685
685
1

1832177 Dear Dr. M,

It’s not like I hadn’t heard of you before we walked into your office that day. Your reputation as the best developmental paediatrician around is why we stood in front of you. I had done the research on you, both professional and personal. I knew who I was looking at, but I still stared a little too long during our greeting in the hospital lobby. I wanted to really understand the woman who held so much power over our world. The hospital lobby was drab and dated. It crossed my mind that the hospital was desperately overdue for a makeover. I escaped my current situation and imagined the steel and glass it would take to update the entire structure. I became abnormally interested in the architecture of the hospital as you and my husband, Alex, exchanged pleasantries. I was safe as long as I stood and stared at the “modern” design of an architect who peaked in the 80s. I didn’t want to move toward the elevator, as I would then be committed to this assessment, but when Alex readily stepped in behind you, we were on the move. I stepped carefully along the yellow line that led patients to the x-ray departments? Specimen collection? Wherever. It was broken in spots from years of people dragging their feet along it. When we reached the elevator I lingered on this line a little too long. You and Alex moved swiftly into the waiting elevator. Kate, happy to be in Alex’s arms, clutching her Buzz Lightyear. I reluctantly stepped off the line and into the elevator.

You were smiling at Kate. She smiled back. The elevators had mirrors inside so I was able to surreptitiously watch you interact with Kate. I took in your makeupless face.  Good, I thought. She is such a scholar that she has no time for trivial things like cosmetics. Surely, an intellect like her would not falsely diagnosis our Kate. This would all be straightened out in a matter of hours.

You led us down the hall towards your exam room. We walked past sick children. We walked by mothers and fathers so damaged by their child’s illness that they appeared hollow. I willed myself to prioritize our current scenario. I shamed myself when I could not. You’ll be surprised to know how many thoughts violated my mind during that short walk.

When we entered the room Kate happily greeted the lady that waited inside. A speech pathologist as I remember. She didn’t interest me nearly as much as you. I knew she would be aiding you in your observations on that day, but she appears faintly in my memory while you stand out vibrant and alive as if it were yesterday. The room was large and bare. A small table and three chairs sat haphazardly in one corner as if they were moved hastily out of the way. The floor was carpeted in an industrial maroon that bore the signs of years of traffic in and out of that door. How many people were crushed inside that room? How many times did a parent stare at the barren threads of this offensively antiquated carpet to avoid crying in front of you? How many succeeded?

Kate chose you that day. Kate chose you to be her person in that room. I had originally considered that act of social interaction to be a wonderful reason for you to determine that she was far too social for autism to be a consideration. Oh, how wrong I was. I would soon obsessively research autism and its many characteristics to the point where I could detect it in someone I saw walking down the street. Not this day, though. This day, those myths that I work so hard to dispel now, were giving me false hopes, and I liked it.

You asked questions of my husband and me. None of them surprised me. I had rehearsed my answers a million times in the weeks leading up to the appointment.

Does Kate make regular eye contact?

Of course. She is very friendly. (She never could hold it for long, but that wasn’t the question you asked, was it?)

Was Kate up on her toes, at all?

Not that I had ever noticed. I looked to my husband for support. I knew he was less than obsessively attentive to these kinds of things. He was an engineer. I worked with children with autism all day long. I knew what that could mean. He concurred. I exhaled.

You smiled sweetly. Not in pity or exasperation for my obvious denial but in a kind gesture of empathy for the battle you knew was overwhelming my brain.

Does she show interest in her peers?

She would, but she is new to her daycare. She doesn’t know of them yet. She is not yet 2. Do 2-year-olds pay attention to peers? I tried desperately to imagine our eldest daughter, Grace, at age 2. The image crushed me without warning, as Grace was highly verbal and was speaking in full sentences by now. I quickly pushed that image away. How unfair that something that once made me so proud could break my heart at that moment.

The questions and observations went on for hours. You made notes. Your speech pathologist friend made notes. I watched your pen move looking for the tell-tale movements of writing a capital letter A. You were careless with your notes. You scribbled them out quickly. This suited my profile of you, but it offended me in a small way, too. I wanted every word you wrote about Kate to be meticulous. I wanted some control.

When you were finished with your observation you left us in the room sitting on the floor with Kate. I played half-heartedly trying to show Alex that I was convinced this was all a big misunderstanding. He did the same. You were gone only minutes. This, I knew, was not a good sign.

You entered the room and motioned for us sit in the chair opposite you. Kate sat on my lap. Kindly, the very first sentence out of your mouth was this:

Kate has Autism Spectrum Disorder.

I had not prepared sufficiently to hear this. Who could, I guess? I heard that sentence, and then I heard nothing else. I signed some papers. Your eyes were so kind. I’m sure you would have walked me to the car if Alex had not been there. You talked for a while. I stared at your kind eyes some more. My husband answered you. Was the speech pathologist still there? I can’t remember. My heart hurt. Not my feelings. The heart in my chest ached. It rejected your words. My brain was nodding along with you. I was dizzy. I held in my tears.

It was my mother’s birthday, you know. We were heading to her birthday party directly after the appointment. Just a small party. Family only. It was a 30-minute drive. We didn’t speak. Alex held my hand. Kate played happily in the back.

Upon arriving at my mother’s house for her party we piled out of the car. I walked in first. I was anxious to get it over with. I walked in with my eyes down. When I raised my head my brother was looking at me with those same kind eyes. Then the tears came.

It’s been many months since that day. I’ve stopped crying for the most part. I tend to cry only in my car now. It is the only place I am ever alone. I don’t cry because Kate has autism anymore. I cry because I hate to see her struggle.

I wanted to thank you for your kindness that day, and I really wanted you to know that Alex and I have since found relief in this diagnosis. I have stopped obsessing over milestones. I am no longer consumed with dangerously unprofessional internet checklists about autism. We are getting to know Kate so much better now that you have started us on the path to learn how to communicate with her.

So, thank you, Dr. M. Thank you for understanding that Kate wasn’t the only one who struggled to make eye contact on that day. Thank you for intuitively reaching out with small gestures of kindness because something as personal as a hug would have had me wracked with sobs. Most of all, thank you, for promising to follow Kate as long as we need you, because we surely need you now.

Best,

Kate’s mom

This post originally appeared on Go Team Kate

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

685
685
1
TOPICS
JOIN THE CONVERSATION

Here’s What Happened When I Decided to Reach Out to Strangers

97
97
1

In the 1980s there was a national advertising campaign for the phone company AT&T.

Reach out, reach out and touch someone! Reach out, call up and just say hi, urged the happy singing voice on the television commercial. The campaign was a huge success that resulted in a large increase in sales for the phone company.

This commercial reinforces an ideal that still rings true today. Inherently we were put on this earth to connect with other humans. Sometimes we make life about the price of gas or work or arguing over religion or politics, but at the root of it all we want to listen and be heard. We want to be understood and related to. And with the advancement of technology and the quest for connection, some of the heart and intention we carry gets lost. Our eyes remain down on our phone. It makes me wonder what the future will look like. I wonder what will come from the loss of intimacy that a cellphone can bring into our life.

And it’s so easy to blame technology or social media or others, but in doing that it’s the same as saying we are hopeless to change. Together we can be the change. We can change our community, our bubble, our nest — and in doing so, change the world our children see. We can feel less alone and more connected. I have five ideas we can implement this week to reach out and touch someone.

1. Wave to random people all day long. People waiting at bus stops, people out for walks, people driving in the car next to yours. Your neighbor. The cab driver. The trash man. Try it. It’s awesome. Isn’t it amazing that we all get to be humans here discovering earth together? I know! Astounding! Of course I would never suggest you do something I hadn’t tried myself. I did it this afternoon while in the car. I smiled and waved at everyone.

_MG_9894_zpsde891eee

I was nervous and felt odd at first. Why is it so weird to reach out to people we don’t know? I was afraid I was going to look like a weirdo — which I did — but so often we look like a weirdo by mistake. Why not do it on purpose?! The first gal smiled really big and waved back! I loved her. Woman number two looked at me nervously and then abruptly looked back forward, hands at ten and two. Man three looked at me like, “How do I know you?” as he smiled and gave a half wave. It was so fun I’m going to try it again tomorrow. I dare you to try it too.

2. Give away kindness like it’s free. Because it is! Do things for old people. Old people love kindness because they have already figured out it’s the key to everything. Take up their trash cans from the curb after trash pick up. Offer to walk their dog. Bring a teacher-friend dinner as they try to adjust to the new back-to-school schedule. Engage in conversation with people you otherwise usually wouldn’t.

_MG_9900_zps22da2aa3

The place where the boys go to school/therapy has the most beautiful grounds. Green, lush, immaculate. Perfect. I feel so good when I walk through. There is almost always a gentleman outside pruning, trimming, cleaning and planting. Today I smiled and said hello as I walked the boys in. The man looked up and then quickly went back to his business. Hmmm… I thought.

On the way in picking them up I said to him, You do such an amazing job keeping this place beautiful, and he gave me a quick half-nod and began watering the bush in front of him. He’s a little cranky, I decided. He was so cold to me that I began to wonder — Does he have special needs? That would make sense. I asked the school director. He’s deaf; he reads lips, she told me. And it was one of those profound universe moments. The way people behave is not about you, Chrissy. It’s about them. He wasn’t ignoring you, he wasn’t cranky, he wasn’t rude. Don’t assume anything. So next time I will be sure to engage and communicate in a way that works for him. That God! He sure is funny planting all these lessons right in our very own little garden.

3. Write a letter. Like with paper. And a pen. You can also go to the store and buy seven cards to give away one a day for a week.

IMG_6507_zps7902e142

I love this line of cards from Compendium Inc. I get them at Cost Plus World Market. They are usually my go-to just because cards. Their motto is “live inspired.” Amen.

Or, dig up the cards you already have in your house and use them. Who cares if it’s a birthday card and it’s not their birthday? Or if it’s a “Get Well Soon” card and they aren’t sick? Not only are you surprising someone with fun mail, you are making them laugh with your funny, not-meant-to-be-funny card. There’s one thing better than getting fun mail. Sending fun mail! So be selfish and give yourself joy! Write a letter!

4. Make a phone call. There are some natural phone talkers. I am not not one. When the boys are with me I can’t really talk. Or listen. At all. Or my walls end up getting covered in black Sharpie. True story. But every so often it’s divine to connect voice-to-voice. So often we will say, I wanted to call, but I knew you would be busy, and I didn’t want to bother you. This week — I say bother. But here’s the catch. If you get voice mail say, You don’t have to call me back. I just wanted to call you and say: blank. (You have to come up with the blank part.) I can’t tell you what a relief it is when someone tells me I don’t have to call them back. Even better when someone let’s me know I was on their mind.

5. Make plans for a proper get together.  “Let’s get together soon!” “Yes! That sounds great. Soon.” That conversation happens way too much. Let soon be now. If not soon, at least get it on the books. A girls night. A date night. A coffee with your neighbor. You’re tired. You’re busy. I know, I know. Connecting with others fills your bucket in ways that a nap never could though.

Make moments — tiny little moments to connect with all the other awesome humans in the world. You can change the world. I’m pretty sure it’s one of the mysteries we are here to unravel.

If you have a moment, check out this impactful, makes you think video on the importance of just looking up. It’s well worth the watch.

Your pal,

Chrissy

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

This post originally appeared on Life With Greyson + Parker.

Reach out. Like us on Facebook.

97
97
1
TOPICS
JOIN THE CONVERSATION

I Used to Believe in Pet Rocks and That Plaid Pants Were the Best

33
33
1

When I was a little kid, I believed in a lot of things. I believed in magic, wonder, in the power of wishes and kisses, and that I – and all of us – have the power to change the world. I still believe.

Back then, though, I thought bad people only came in windowless white vans, that if you played a record backwards you could accidentally end up insane and that popcorn balls and apples received on Halloween had to be thrown away because of the danger of razor blades. I believed in Shawn Cassidy, too.

I believed in witches under the bed and in dolls coming to life while I slept (which is why, just in case, I always removed their heads at night and hid them from their bodies).

I believed that my parents’ love would last for always and that I’d never not know what all of my best friends forever were up to every hour.

I believed in being a pen pal and in letter writing, because long distance phone bills were much too expensive to be wasted on childhood gossip. I believed that I’d love the next door neighbor boy forever,and that when he moved away, I’d never have anybody understand me, ever again.

I believed that the bigger the stereo was, the better and that deep shag carpets and plaid pants were the best thing ever invented.

I believed that not having a basket on a bicycle was tragic and that Pooh raincoats would be a fashion statement that withstood the tests of time.

Plaid-pants-and-winnie-rain-coat(pp_w477_h443)

believed in pet rocks and that there would never be a day when kids didn’t leave the house in the morning, unheard from until it was time for dinner at 5:30.

I believed that grownups had the answers to everything.

I knew that phones were connected to the wall and that if you wanted privacy, stretching it around the corner of the kitchen divider wall next to the avocado green refrigerator was best. I believed in the ’70s, friends.

Today, I believe in raising awareness and empathy for special needs, in helping people to understand that the words “special needs” and “autism” are not scary or to be pitied. That life, with or without these words, is almost always worth it and, more often than not, when we can see it, beautiful.

I believe my little boy when he knows best about needing to hold my hand while he falls asleep, that it is true that chasing bad dreams away before he falls asleep works, and that I am the best “play with me” friend he has. I believe that he will be fine, after I’m gone, because not believing in that isn’t an alternative.

I believe in you guys and that you will accept my little boy, just as he is.

I believe there will be a warm and safe place for him, always. That you and your children will welcome him and will be patient with him when he needs a few moments to gather the courage to speak and when he needs a few more to say what he needs to say — and maybe, he’ll need to take a few times to do so for you to understand.

I believe in the magic of my youth and those carefree days before cell phones, laptops, social media and GPS.

I also believe in now.

In the power of social media (have you heard that the ALS Ice Bucket Challenge has collected $41.8 million since the end of July? Stay tuned because I have an idea for a social media trend to raise awareness for children whose words become broken.).

I believe that I can still change the world.

That all of us can.

I believe in tonight and in all of the tomorrows.

This post originally appeared on Finding Ninee.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

33
33
1
TOPICS
JOIN THE CONVERSATION

Justin Timberlake Interrupts Concert to Sing ‘Happy Birthday’ to Fan With Autism

179
179
0

When the parents of an 8-year-old boy with autism learned that he wanted to go see a Justin Timberlake concert for his birthday, they had no idea that JT would give their son the best surprise he could have imagined.

Earlier this week, during the show in San Jose, California, Timberlake asked the whole crowd to join him in singing “Happy Birthday” to Julian.

In a blog post describing the moment, Julian’s mom, Marika Rosenthal Delan, wrote that she was concerned about bringing a young boy — especially one with autism — to an adult concert. She said she was worried about her son’s “obsessions, his volume, his repetitiveness, his clumsiness, if he would spill someone’s drink and if they would be unkind to him.”

Her fears were put to rest when the girls sitting in front of them, whom she thought Julian had been annoying the most by constantly kicking their chairs and yelling loudly, got the singer’s attention and kindly urged him to give the boy the birthday gift of his life.

The touching moment can be seen in the video below, which the family posted to Facebook.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

179
179
0
TOPICS
,
JOIN THE CONVERSATION

Epilepsy, You Picked the Wrong Dad

330
330
0

Liv_Dad

A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister’s love and a mother’s devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so. And please share with others so that we can spread epilepsy awareness.

This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy’s epilepsy has changed me. And now it is time to fight back.

A Father’s Promise

Livy, from birth I have watched you.
Stiffening, shaking.

Everything new.
I am scared.
What do I do?
I am not ready.
I look in the mirror, eyes glossed.
Tears, I wish they were happy.
Why, why is this happening?
Spirit crushed.
I am lost.
Doctors, EEGs, surgeries, shunts, oxygen machines, hospitals, medicine pumps.
Beeping, would someone please stop the beeping?
I hold my breath when you do.
When will it stop, when will the seizure stop?
Ashen, you are ashen.
Finally, it breaks.
You are back.
Where did you go?
Do you know?
Do you know what happened?

Time is stolen.
Tick-tock, lives torn apart
10 seconds, 10 minutes, 10 hours, 10 days, 10 weeks.
Stolen.

But look at you, Livy.
You amaze me.
Your smile. Your gorgeous, beautiful smile.
You light the room, you light my life.
I know you are back when you smile.
It is your signal that all is clear.
The monster is gone.
For now.
Back to the closet, under the bed.
Hiding, lurking in the shadows.

Epilepsy, you are the nightmare.
You terrorize our children.
Waiting, always waiting.
Constant vigilance.
I know every move you make.
I thought…
Did you see her flinch? Is that a new twitch?
Changing, morphing.
Always one step ahead.
But someday, somewhere, I will catch you.
You think you are free.
Turning lives upside down.
Striking whenever you please.
No more. No longer.

I was afraid.
I saw eyes that were not Livy’s, quivering, bouncing.
That look. It was not her. It was you.
Now I see through the fog.
I am emboldened.
The fear I once felt, tucked down deep
Now burning, boiling, a yearning to do more.

Epilepsy, you picked the wrong dad.

I did not ask for this.
But I accept it.
I accept your challenge.
You give me purpose.
Was that your intent?
I do not think so.
You may have her now, but I am coming for you.
You have stolen from me.
My daughter’s innocence.
A life of peace.

I will not give up.
I will not relent,
I will never give in.
You have awoken me, a passion I never knew.
As long as I am here, I will fight you.

Yet you are a coward, you attack our youngest and most at risk.
No matter sick, hurt, asleep in their beds.

At night I check, chest rising, skin warm,
What would I do if she took her last breath?
It happens, the ultimate price.
I have read stories, so many stories.
The pain, the anguish.
I hurt for them.
I am angry.

You made me.
I am your enemy.

I am not alone anymore.
I will gather determined mothers, fathers, sisters and brothers.
Warriors in your throws aching to break free.
You have no idea what you started.

Think Livy is your victim?
You are wrong, very wrong.
She is a Hero, my Hero, with the power to inspire and give hope.
She is stronger than you could ever dream.

You used to make me cower, retreat.
But now I am emboldened.
The scars burn and I remember.
Oh do I remember.
Livy bears her scars, physical, emotional.
What you have done to her.
Her little body.
You broke her so many times.
My God, what I have witnessed.
My heart and soul are changed.

But you will not beat me.
I will chase you and never stop.
Wherever you are, I will be there.
You have found refuge in the shadows.
But no longer.
I will bring you to the light and show your true colors.
My color is purple through and through.

If our Warriors falter, I will be there to lift them up.
To tell their stories.

This is your last warning, Epilepsy.
I am here to make my stand against you.
I made a promise to my daughter.

This post originally appeared on Livy’s Hope.

Meet more Mighty dads. Like us on Facebook.

330
330
0
JOIN THE CONVERSATION

Captivating Photo Series Shows What Autism Looks Like Around the World

4k
4k
5

In the last two years, Debbie Rasiel has traveled through six countries to photograph families affected by autism. She’s met children across the spectrum — some don’t talk; some have physical, maybe even violent, outbursts. She’s met their parents and siblings, too — with a translator, she’s spoken to many of them. She’s watched and learned about different types of therapies available in countries like Mexico, Iceland and Indonesia. She’s experienced differences in culture and language, in weather and in class.

“The thing is, it’s always so similar,” Rasiel, 53, told The Mighty. “At the end of the day, even with the cultural differences, it’s the same. It’s a mother who is worried about her child’s future. It’s a special needs family. It’s autism.”

The New York City-based photographer calls her two-year endeavor, “Picturing Autism.” This past May, it debuted at SOHO20 Chelsea Gallery, but the project is ongoing — Rasiel is currently planning a trip to Vietnam. With the help of autism Facebook groups and the Global Autism Project, she’s found ways to connect with families from all over the world.

She’s comfortable photographing autism because she’s familiar with the disorder; her 23-year-old son, Lee, is on the spectrum. So when she talks to families, she’s talking as an artist and photographer, of course, but she’s also speaking as a mother.

“I’m not rattled,” Rasiel told The Mighty. “I’ve seen it all.”

When someone affected by autism, either directly or through a loved one, sees her photos, she hopes, above all, they feel less alone.

“[Autism] is in every country. It’s a global village we’re in. It’s everywhere. No one is alone,” Raisel said. “You’re a part of something larger.”

Take a look at “Picturing Autism” below and view the full series here.

Queens, New York

QueensBlog12

Cuzco, Peru

L1002279ab1

Oaxaca, Mexico

DSC67311

Lima, Peru

DSC87811

East Harlem, New York

DSC1906a1

Reykjavick, Iceland

DSC677021

Hveragerði, Arnessysla, Iceland

DSC6413bw11

Jakarta, Indonesia

JakartaBlog21

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

4k
4k
5
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.