Dear Autism,

Although we were formally introduced only three years ago, I have lived with you for seven years. We are intimately involved every day, but I hardly know you. I’m still trying to process how I feel about you.

I don’t appreciate your mysterious nature or the havoc you wreak, and I am dismayed that you are a larger obstacle for my son than we originally thought, but I can’t hate you.

I can’t hate you because you and Conlan are so inextricably entwined that I don’t know exactly where one ends and the other begins. I can’t wish you away because Conlan wouldn’t be Conlan without you.

You influence every aspect of his life — how he learns, how he communicates, how he sees the world, how he moves. I see your signature in his play, his expressions of joy, his focused and obsessive interests, and even his sense of humor.

I am angry at you, Autism, because you play hide and seek with my son. You hide him behind impenetrable barriers and force me to seek, seek and seek. I cherish the occasions when you step aside for a moment and let us experience an authentic and meaningful interaction with Conlan — a moment or two without scripting or perseverating, a moment where he spontaneously connects to the conversation or situation we are actually in instead of the one occurring in his world.

I’m amazed when you allow us to peek inside the world you share with Conlan. A few months ago as we walked into a hotel room, Conlan stopped in the middle of the room, transfixed by the window. “Oh, look, it’s so beautiful!” he exclaimed in awe. I looked at the window and saw that yes, it really was. The gauzy curtains sinuously danced in the air blown from the cooler below while the spotlights outside on the roof illuminated them with a magical glow. I never would’ve noticed, but he saw something special, and he was able to share it with us.

I wanted to freeze time, so we could enjoy that moment for a little longer. But then he discovered that same window offered an unobstructed view of the cars speeding by on the interstate below, and he retreated back into your arms. You closed the door on me and held his hand as he jumped and flapped as the cars whizzed by.

Your very nature is a challenge. You are an invisible disability, so people judge Conlan’s behavior harshly and unfairly. You aren’t a disease. You can’t be cured or treated — and you won’t eventually kill him — so you are a chapter in our lives that never ends. Over time our friends and coworkers — and sometimes even family members — become less supportive and accepting of our needs and constraints as you continue to command our time and dictate our activities.

My family, Conlan included, has sacrificed so much to accommodate you — money, time, energy, plans, dreams, tears. My career is the latest casualty in this adventure, and while that makes me sad and even a little resentful, my only real comfort is that Conlan is worth it.

Conlan

I accept that you are a part of my son, and I respect your eccentricities and conditions. But I am angry at you for selfishly keeping him locked away so much of the time. I’m angry that you are interfering with his education and functional development.

Can’t you work with Conlan instead of against him? After accepting you as part of his life with such grace, he deserves better from you.

I acknowledge that you are responsible for his unique way of seeing things and you are the reason he has developed a remarkable work ethic. You encourage his passions and give him the focus to memorize information he wants to keep. But you also withhold his language skills, confuse his sensory system, and obstruct basic functional capabilities like zipping a coat, handwriting and using utensils.

Can we make a deal? Just let go enough for him to function in the real world. If you would stop holding his words hostage and untie his motor skills, I’ll get on board with the obsessions and start stimming right along with him. With the right motivation I can jump and flap with the best of them. I’ll memorize all the Cars and Planes movies so we can run the scripts together. I’ll learn to speak Minion so we beep and bop back and forth. I’ll even paint his bedroom to be an undersea whale paradise.

I always tell Conlan I love him while I’m tucking him into bed at night. And I always hope he will tell me he loves me too. If he responds at all, he usually says, “Yeah,” while he watches his fingers flutter like a dragonfly at the corner of his eye. One random night when I said “I love you Conlan,” the dragonfly stilled and Conlan looked me in the eye, put his hand to my cheek, and said, “I love you, too, Mom.”

For more of those moments, Autism, I will do just about anything. I know I have to share him with you, but you also have to share him with us — more than you have been. If we work together, we can give our boy a fulfilling, productive, happy life.

And if you can’t get on board with that, know this: I’ll never stop fighting for a better custody arrangement.

 For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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I learned a million strange lessons in doctors’ offices and hospitals with my daughter, Sammi, in the years that spanned cardiac surgeries, gastroenterology drama and everything else her little body gave her to manage. This mastery I had over her health — the details only I could have described — has never gone away. I’m vigilant, I’m well-trained, I’m fast-twitch muscles and marathon endurance.

This is why I panic at the thought of unvaccinated children.

When Sammi was 18 months old, she was in childcare just a few hours per week. She was under 18 pounds, miserable to feed and deeply, deeply beloved. She’d had ear tubes, a bronchoscopy, surgery to slice open the extra, troublesome arch of her aorta that had been choking her, and had her esophagus dilated. She was on anti-reflux medication. Her trachea, despite the surgery designed to free it, was at best 35 percent open.

Whooping cough could have killed her.

OLYMPUS DIGITAL CAMERA One day, I dropped her off at childcare to spend three hours working, and I got a call several minutes later with the news of her fever — 101.3. I picked her up, took her to the doctor and learned one of those sneaky lessons that never goes away, regardless of the fact that I’ll never need it again:

When your pediatrician sends your feverish baby for a chest X-ray, worry.

When the radiologist sends you to the lab for a blood draw before your baby even has her shirt back on, worry.

When the blood lab turns you away at the door and says your pediatrician wants you back in her office immediately, worry a lot.

Sammi had pneumonia. Her fever barely broke for days, the antibiotics gave her a horrific diaper rash, and her lungs were so wet and her constitution so weak that she lay on my chest in a sling and beat it slowly with her cold, sweaty hand, limply crying mama, mama, mama. I was right there. She was out of her head.

She lived through that pneumonia and another case a few months later, disconcertingly in the same lobe of the same lung. If that had happened one more time, there would have been another bronchoscopy to find out what was wrong with that lung. Thankfully, she never got that third pneumonia.

If Sammi had brought pneumonia to a friend’s baby who had consequently died from it, I would have been devastated and felt horribly, life-alteringly guilty, but I would know I might not have been able to prevent it. If an unvaccinated baby, whose parents were within their rights to refuse vaccination, had brought my baby whooping cough, my child could have died.

Sammi had just over one-third of the airway of a normal child. You couldn’t tell by looking at her. On a good day, she probably had to work harder for air than most people.  I’m not questioning the right of parents to refuse vaccines for their children, but the fact remains that the consequences to babies like Sammi are real.

Is she one in a million? That I don’t know. She’s one in a hundred million million for me, the baby I fought for, kept alive under hideous circumstances, gave over to a surgeon to slice. It wasn’t easy to keep her alive. Vaccines? For me, there was never a doubt I would send her into the world with anything I thought might protect her.

There are things everywhere that endanger the lives of our children: bullying, gang violence, and, not least of all, communicable diseases. Would I throw my child in front of a bus to save yours? I must admit that I would not; the chances of her death would be too much for me. That’s too much risk. Would I teach her gentleness and kindness and generosity in a world that may, in the end, take advantage of her for it? Yes. That, I will do. That has a risk, but it’s smaller, hopefully, and falls in line with my values in a way I refuse to compromise.

That’s how I protect your children. That’s my thank you for keeping her alive, my thank you to the universe and to the other parents who cared for her and about her enough to wash their children’s hands, keep them away when they were sick, and yes, to vaccinate them. If there was a way for me to thank every single parent whose vaccinated children came in contact with Sammi in the years of her compromised airway, I would do it.

You helped me protect her. Thank you.

This post originally appeared on Swallow, My Sunshine.

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Everyone has at least one day in their lives that they could call “life-changing.” When applied to my life, there are a few moments that come to mind: high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again. I can tell you the month, date and year all of those things occurred; they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life. One thing they all have in common is the joy that came with them and the tears shed by me or others looking on with love and pride.

But there’s another moment, one that will be with me until the end of my days. It’s a moment I’m not proud of, a moment full of anger and hate and tears. Three years ago today, I was blissfully unaware that I was about to add another life-changing moment to my list. I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings and leave me shaken, ashamed and confused.

When I think about it, I don’t really remember much about March 20, 2012; it wasn’t anymore special to me than any other day. I couldn’t tell you what I had for breakfast, lunch or dinner. I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter. I’m sure I was happy or as happy as a pregnant lady chasing a toddler could be. We had some scary news earlier in the pregnancy that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

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And then the next day came. I remember going to work and having a fairly pleasant day in triage. I chatted with friends; few knew we had an amnio, so it wasn’t on the forefront of my mind. As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in. So I did just that. I called him back, and then March 21st was added to my list of life-changing days. It wasn’t a happy occasion; the tears shed were not ones of pride, joy or love.

I can sometimes still feel the fear and confusion I felt after hearing the doctor utter two little words “Down syndrome.” I can still feel the tears that rushed down, soaking my steering wheel and t-shirt. I can still picture the confused look on the old man’s face, who tapped on my window to check on me. I can still hear the three words I shouted in anger at God as I pulled out of the parking lot: “I hate you.” And I can still hear the thoughts echoing in my head about my unborn son: “I don’t want you.”

As I said, it wasn’t a moment I remember proudly. My initial reactions left me feeling guilty and angry at myself.  I went home that night, kissed my sleeping daughter and changed into my pajamas. My in-laws came over to discuss our results. I ate cold Ramen noodles. I’d told my mother-in-law, “I like them cold,” when she urged me to eat them. I didn’t want to tell her I had no desire to eat anything. I cried some more and then went to sleep. And then it wasn’t the 21st anymore.

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Over the following weeks and months I learned as much as I could about life with a child with Down syndrome. I prayed. A lot.I forgave myself. My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further. Then Gabe came and slipped seamlessly into our lives. Mommy, Daddy, daughter and son — our perfect family. I like to think of the days before Gabe as the days “Before Down Syndrome.”

Those were the days before words like “chromosomes,” “trisomy,” “low tone,” “therapy,” “advocacy” or “acceptance” were part of my everyday vocabulary. The days before I understood what it meant to use people-first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a timeline, throw it out the window and be OK with it. Those were the days before I fell in love with a blue-eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome.

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

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This post originally appeared on Hand Me Downs.

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1-sheet (FINAL 0211015) No one could pinpoint exactly why David DeSanctis was the clear choice to star in the upcoming film, “Where Hope Grows.”

There was just something about him. 

The 21-year-old from Louisville, Kentucky, has Down syndrome, and originally, producers and director Chris Dowling weren’t sure how his intellectual disability would affect his ability to act. Turns out, not at all. DeSanctis memorized more than 130 lines and taught nearly everyone he worked with a valuable lesson — don’t believe the stereotypes.

As he said in our Mighty World Down Syndrome Day video, “Can’t you see my abilities?”

“Where Hope Grows,” a film that follows the budding friendship between a former professional baseball player (Kristoffer Polaha) and a grocery store clerk (DeSanctis), will be released on May 15. But while DeSantcis was in Los Angeles, we caught up with him to learn why he finds awareness days like World Down Syndrome Day important.

David at grocery store - Produce Tom LeGoff 2013-3452-Edit-Edit Why is it necessary to have a day like World Down Syndrome Day?

It’s a day to look on our abilities instead of our disabilities. If you see a person with an intellectual disability like Down syndrome, maybe you can go up to them today and give them a handshake or a high five or a fist bump or even a hug. It could change their life in about one second.

[DeSanctis has pledged to hug strangers as part of an act of kindness campaign for World Down Syndrome Day.]

Raising awareness is important because it teaches everyone that we’re just normal people and we deserve to be treated that way. We’re just people.

What would you tell other actors with disabilities trying to break into the industry?

Follow your dreams. Never give up. Never say never. Push forward and go for it. And if an audition opportunity comes along and you don’t get picked, be brave. Just wait for another gig to try again.

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Dear epilepsy,

IMG_20150226_135013 I have to admit, your existence in my 11-year-old son’s sweet brain shook me to my core. You robbed me of my peace of mind for a day, though you linger every day. When we were introduced officially on March 18, 2015, my body went into fight-or-flight mode. I have dealt with so much with Peter’s sister, who happens to have Down Syndrome and autism. You just weren’t invited to this party.

I have to tell you, though, just a day later I felt like I could handle you. I’m ready to add you to my list. I’m ready to fight. You will not take my peace, ever. I know there will be days when your presence will seem too much to bear. I will take those days moments at a time.

I want you to know that I will not allow you to scare my son. He’s sweet yet tough. Like I said, I didn’t want you, I didn’t invite you, but for some reason you’re a part of my boy, who I love dearly, and so I accept you. But remember this: I will protect him. You will not control his life; you will not steal our peace. We will learn as much about you as we can. Oh, and by the way, I wish you would have picked a better time… but life on life’s terms. I will take you on and share all I can for epilepsy awareness.

Sincerely,
One determined mother who will always choose to fight.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

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This originally appeared on Role Reboot. Republished here with permission.

I’m not a person who relishes infinite choices, paths ahead all equally fraught and delicious. I like guidelines and known entities, maps and strategies. Parenting is, understandably, a challenge for someone like me, who wants to know what’s coming next.

Even without those proclivities, all parents wonder about the origins of their children’s difficult phases and their own complicated reactions to them, considering the ramifications of every choice, asking for advice and considering every angle. Did I handle that right? Could I have avoided that struggle?

My daughter, Sammi, however, has raised that level of uncertainty to an entirely different level. At 9 years old, for the first time ever, she’s just had several months without surgery, medication or special diets, leaving me wrestling with the questions above plus another: In these nine years, what was part of the normal rhythm of childrearing, and what was related to her constant ill health? What required the normal course of action, and what called for something different?

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When she was a baby, I was flattened by feelings of thick despair and panic, believing something was wrong with her. She didn’t sleep, breathe or eat right — and my psyche was on fire, all adrenal glands pumping vigilance into my veins for months. Doctors told me she was fine, told me to sleep train her, to withhold nursing and offer more food, to wait for her to outgrow things.

I had nearly every symptom associated with postpartum depression. I went to therapy because that’s what women with postpartum depression are supposed to do.

It turned out that Sammi really was broken. When she was a year old and on her third hospitalization for a cold, we finally discovered an extra artery wrapped around her airway and gullet, choking her from the inside. Surgery at 14 months to correct the problem put an end to the hospital stays for respiratory infections. The constant nursing I’d doggedly determined to continue had turned out to be the only thing that kept her from a feeding tube. My regular nagging and anxious questions were what kept her in front of the doctors who eventually diagnosed her.

It was the biggest, ugliest feeling of “I told you so” I’d ever experienced.

Does that mean I didn’t have postpartum depression? Does that mean my anxiety and panic, my feelings of fear for her life, were not hormonal but pure instinct?

I will never know.

*****

As a toddler, Sammi’s tantrums were monumental and violently self-harming. She sat balanced on her tailbone on our hardwood floors and threw herself backward to whack her head against the wood, screaming, over and over until I moved her onto a padded cushion, which only dulled the thud.

She woke raging in the night, yanking me awake with the sound of shrieking and banging. I’d race up the stairs to her room and find her in the dark, on her floor, grasping the upturned ends of her rocking horse to hold them in place as she rammed her forehead into the sharp ends. We took the horse away after that happened more than once, but she just used the bottom rail of her toddler bed instead.

We cut her hair with bangs to cover the bruises she gave herself.

Eventually, terrified that something horrible was happening inside Sammi’s brain, we went to a developmental therapist. The therapist listened thoughtfully and assessed the situation as chronic sleep deprivation resulting from Sammi’s years as a cardiac patient and our reluctance to set boundaries around bedtime. Gently but firmly, this therapist led us through behavioral changes we could make for ourselves that eventually resulted in equally epic behavioral changes in our preschooler.

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Does the fact that our changed behavior resulted in our 3-year-old-daughter changing her behavior mean it was our fault all along? Or was there something really wrong with her — a neurological issue — that she simply outgrew while we worked through our own issues?

I will never know.

*****

I read to Sammi, as I had to her sister, all the time. We sat together, the three of us, as my finger pointed at the words, and I lent voices to characters and described the pictures. Her sister became a voracious reader. She did not.

Her intelligence seemed just as keen as her sister’s; she navigated the world easily, identified colors and sang songs from memory, but she did not read. She squeaked along in school just at or just under grade level, her frustration with decoding letters into words and words into sentences reaching an explosive level, mediated only slightly with each year of maturity.

I wondered if her inability to eat well was affecting her ability to concentrate. Myriad gastrointestinal issues had kept her from eating more than a few bites of food at a time for years, a schedule not easy to manage during the school day. I knew she was always under-fueled. Could this be keeping her from staying on task with reading?

Her teachers said no. They said she was fine, that some students take to reading later, that she was not flagged for reading specialist support.

However, after a second cardiac surgery at age 8 — to free her aorta, curling itself into her esophageal walls — finally gave her the ability to eat well and quickly, her reading abilities jumped several levels in a matter of months. Chapter books and series began to fill the shelves beside her bed. I need the next one, Mommy became a common phrase.

Does that mean her teachers were wrong? Did she need the better nutrition for her brain to accommodate the reading her grade level dictated, or is this a coincidence of that magical developmental step they said she’d take when she was ready?

I will never know.

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At 9, Sammi stands just a hair above 4 feet tall and weighs just barely 50 pounds. Her projected adult height is 4 feet, 9 inches tall.

She was born small and proportionate and never measured higher than the third percentile. It seemed we were always being promised that now she would grow: after her first cardiac surgery, her tonsillectomy and adenoidectomy, the diagnosis of gastrointestinal disease, another cardiac surgery.

They eventually started calling it idiopathic short stature instead of failure to thrive.

We refused the hormone therapy recommended by an endocrinologist to whom she was sent; it would have meant injections six days a week for almost nine years. Every night to say, “We don’t like your size; bend over,” was unthinkable — we said no and left her small.

Will she resent us for this someday? Or would she have resented the injections and their message even more?

I will never know.

*****

It’s a black box, parenting, and even blacker when ill health complicates matters. We can all pretend the parenting books give us a map, but at best they’re a flashlight in a darkened gymnasium, giving us a narrow view only a few feet in front of us. We grope, flounder, children’s hands clutched tightly. We navigate by feel to a destination we can’t even see.

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