Autism Is Not the Common Cold

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“Autism is not the common cold,” I said to a group of family members gathered around a cozy living room after a delicious meal. I had never thought about it that way before, but the phrase has been rolling around in my head for the last several weeks.

We had not seen my husband’s brother and girlfriend in several months and they inquired about my son, Jeremiah, and his progress, and I, in typical fashion, I had a lot to say. I can’t remember the specifics now, but I shared his interests and his victories and how he amazes me every day. How I can’t believe how much he’s grown since his diagnosis three years ago.

Here’s the thing that got me thinking: we discussed Jeremiah’s potential in his future, and how far the doctors and I thought he could go.

My answer? I walk the line of hope and reality.

I know that, based on where J is “at” developmentally at age (almost) 7, I should assume an alternative diploma track and vocational training will be the most appropriate path for him.

And then again, I think: HE’S NOT EVEN 7. Let today be today, and appreciate its gifts.

Autism is not linear, and neither is the growth of the individuals affected by it. Like many on this path, we enter in thinking we can boil it down to a formula. Take these prescribed therapies and those preferred intervention strategies and voila, off the spectrum! Even for the most “high functioning” individuals on the spectrum, who “pass” as typically developing in society, it’s just not that simple.

And as a mama, I want to make it easy to understand for those involved in our lives. Spin our own narrative. “We are kicking autism’s butt and taking names!” Rah, rah, rah!

But it’s just not that simple. And I’m starting to appreciate it.

We started at point A: diagnosis. We went to point B: early intervention. We arrived at C: pulling out of B and homeschooling to focus on relationship building. We moved to D: re-entry of traditional school to enter a self-contained autism class, which we would have never entertained and dreaded just a few years ago.

Now, point E: informed advocacy. After a year of re-entry, we find ourselves at the end of an academic year and are taking stock. J has benefited from the routine of the classroom and the multiple interactions with teachers and adults. His teacher is a dream, an angel among us.

But we don’t stop trying, reaching, searching for what’s the very best for our son and how that affects the whole family. I’m actually walking into an IEP meeting next week informed and prepared. I have sat down and carefully analyzed my concerns and shared them with the team. I have requested several stakeholders present at the meeting. Not because I’m displeased or hostile. Not at all. That was a risk for me. Everyone has been so accommodating that I didn’t want to rock the boat or raise a stink. Hello, I’m a peacemaker. And a woman. And a southern one at that.

But it’s my right and my duty. I’m my child’s best advocate, and I want to make him his best advocate as he grows.

Our little family was out to dinner a few weeks ago, and I was sharing with my husband about all that I had been researching and learning about IEPs and educational opportunities in the future for J. I patted myself on the back for taking small steps of bravery: making calls, asking questions. I expressed fear over those things not being well-received. I worried about challenging the status quo.

My husband’s answer? The reply that made me tell him, “And THAT’S why I married you. That right there”?

“That’s what we do. We. Us. Our family.”

We do whatever it takes for our children. Whatever we can do. We do it.

We are, as the great character Atticus Finch told his daughter Scout, common folk. We follow the rules, tow the line. We are educated, but not pedigreed. We are not “special” and do not view our children as “precious snowflakes” who are better than any other child.

It’s not what we have. It’s who we are.

These children are ours, and as such, we will do everything in our power to secure for them the most appropriate and beneficial methods to aid in their development.

We don’t know exactly what that looks like, but we are committed to searching it out.

Even as we know there is no one answer, no magic pill.

The searching, the banding together, the being-a-family is.

Autism is not the common cold. It is not linear. Nothing is.

And that, despite the hard times, is the beauty of it all.

mother and her three children outside

A version of this post originally appeared on The Jaybird Blog.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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15 Daddyhood ‘Truths’ That Turned Out to Be Lies

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Parenthood, at least for me, has been a series of stumbles and progressions. Some calculated, some not, but all of them a lesson in perseverance and humility. Perhaps the most humbling moment I’ve experienced yet as a parent was the day I realized I wasn’t going to be the dad I’d hoped I would be.

Not even close.

This had little to do with me being a special needs parent and everything to do with me being an honest one. Actually, let me rephrase that… it had everything to do with me being a realistic one. That’s not to say I’m inherently a liar or wildly delusional or something; it’s just that I, like many new parents, chose to believe in the best version of myself right out of the gate. Which, while admirable, isn’t always attainable and only served to show me the parent I thought I should be and not the parent I knew I should be. There’s a fundamental difference there that needed to be addressed. So, as I often do when I need to work things out on my own, I made a list (one of my more spectrummy guilty pleasures). It’s a list of parenting truths that, while not revolutionary, will hopefully provide me (and maybe even you) with some perspective as I continue down the road of daddyhood.

*To give credit where it’s due, this list was actually inspired by another daddy blogger, Jerry Turning, over at Bacon and Juice Boxes (his blog is fantastic, by the way). His list was short, sweet and wonderfully honest. I only hope mine will be half as compelling.

Lie: The world will reveal itself as a nasty, dangerous place full of ugly things and people, and I will protect you from it all.

Truth: You’ll learn the world is not that scary. I promise to protect you from the worst it has to offer, but you will experience adversity, and I’ll do my best to help you get through it.

Lie: I’ll make sure you never get bullied or taken advantage of.

Truth: You’ll probably get bullied. At least once. Maybe more. It’ll suck. But I will be there to comfort you and dry your tears. Then I will promptly address the matter.

Lie: I will make sure you grow up in a world of tolerance, understanding and acceptance.

Truth: You’re wired differently. Not everyone is going to accept that, let alone understand it. I won’t force them to. But I also won’t let you be ashamed of it. Ever.

Lie: I’ll hold your hand every step of the way and will always be there to catch you when you fall.

Truth: My hands will be full from time to time… maybe with your brother, maybe with your mom, maybe with groceries and maybe with life. But I promise to hold yours as much as I possibly can. Likewise, there will be times when you fall and I won’t be there to catch you. You will be mad at me, maybe you’ll even resent me, but if I don’t ever let you fall, you will never learn how to get up.

Lie: I will always say the right things.

Truth: I’m not a robot, your mother or the Internet. I will say a lot of wrong things over the course of your life. But I will always try my best to correct them and learn from them.

Lie: You can do no wrong in my eyes.

Truth: You’ll do some wrong in my eyes, maybe even a lot, but it will be my job to help you learn from it. Even if it takes a couple of tries.

Lie: I will support every ambition, aspiration and dream you have in life.

Screen Shot 2015-05-05 at 5.09.02 PM Truth: Maybe your dream is to build a jail cell for your brother. I won’t support that. But I will always be your biggest fan. Always.

Lie: You must be so lucky to have a dad who does ABA therapy for a living.

Truth: Those are clients. That’s my job. I do that for a living. You are my son. I am a parent. I do that for life. The line between behaviorist and dad is constantly blurred, and while I’m still learning to wear both hats, I will always be your dad first. Always.

Lie: I won’t spoil, coddle, indulge or enable you in any way. You’ll grow up without a sense of entitlement and learn the value of independence.

Truth: I will do all of those things. Occasionally. OK, often. Not because I don’t value your independence but because I am your dad, and that is one my many inherent flaws. I can live with that.

Lie: I will never lie to you.

Truth: I will lie to you from time to time. Most of the time, it will be for your own good or to protect you. Sometimes, it will be because I really can’t deal with another 20 minute meltdown over that Spider-Man puzzle you insist on doing but can never figure out, so it is now “lost” until further notice.

Lie: I won’t keep everything you ever create or bring home from school. That’s f*cking crazy.

Truth: I’ll keep it all. I am a hoarder. Again, I blame my mom.

Lie: I will always set the best example for you and be the most important role model in your life.

Truth: I sometimes forget to brush my teeth at night, I’m pretty sure I eat my body weight in candy each year, I say the word “f*ck” often… and audibly, I drink beer and wine with your mother on a regular basis, I have my head in my phone more often than I’d care to admit, I yell at other drivers in the car, I occasionally forget to return phone calls and text messages, and I don’t delete watched shows on my DVR until it’s too damn late. So um… yeah. I won’t always be the best example, but I will always try. It won’t be perfect, but then again, I don’t expect you to be either.

Lie: When it comes to dads, I’d like to think I’m a cross between Danny Tanner and Philip Banks.

Truth: Wait, did I say Danny Tanner and Philip Banks? I meant Phil Dunphy and Michael Bluth. Yeah, that makes more sense.

Lie: I will always be there for you.

Truth: I won’t be there one day, but when that day comes, I hope I will have given you all the tools, wisdom and resolve necessary for you to live the happy and meaningful life I know you deserve.

Lie: I can never love you more than I do at this very moment.

Truth: I can.

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How Carrie Underwood Helped Me Realize My Child With Autism Will Be OK

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Melissa's daughter
Melissa’s daughter

When we were given my daughter Zoey’s diagnoses  — autism, global developmental delay, dyspraxia of speech (Zoey is nonverbal), sensory processing disorder and obsessive compulsive disorder (OCD) — in August 2014, she was not quite 2 years old. Life in our house has turned into daily therapy. The diagnoses changed how our little family of four operates. This was definitely not the life we planned.

Zoey was hitting every milestone, most of them early. She was walking at 11 months. She was singing and babbling and screaming just to hear her own voice. I watched my beautiful baby grow and learn. Then, at 14 months old, I watched as she “went away.” She stopped babbling, she stopped eating on her own, she stopped playing with her sister, she hid away in other rooms, and I could no longer pick her up and hug and kiss her. I missed her because she was gone. She rocked and banged and screamed, and we had to guess what she wanted or needed.

Frustration, aggression and meltdowns became common, and I felt helpless.

Where did she go? What happened to my baby? She was just here, and now she’s gone. All I kept saying in my head was that autism stole my baby. She was here, and then she was gone. I hated autism for doing this — a secret I kept to myself until now.

My intention is not to offend or upset anyone with that statement; it’s something I’ve carried with me for 10 months. To watch your child throw herself, bite herself, scream out of frustration and watch her scurry away from you when trying to help or console her… well, that’s just not fair.

I was sad and depressed.  I was and still am scared. Having an early diagnosis is good and bad. Good because we got Early Intervention earlier than most, bad because it leaves us with the uncertainty of her future. Will she ever speak? Will she experience the same things her older sister will experience? Boyfriends (not that my husband and I are rushing that… at all) sleep overs, getting her drivers license, graduating high school, college, marriage, children… will she be able to live independently? 

No one can answer those questions for me right now, and I’m scared for Zoey’s future. I’m scared of the mightiest question of them all: What if something happens to me? Will she be OK?

These were my thoughts for 10 months.

Now let me tell you what made me realize everything was going to be OK.

Music is therapy for Zoey; most people may not understand her when she sings, but I do. She can sing “Twinkle Twinkle Little Star” all day. Her calm down “meltdown song” is “I Will See You Again” by Carrie Underwood. I gotta be honest — out of all the songs for her to love, this is the most heartbreaking one for me. Here Zoey is loving a song by a woman singing, “I will see you again, this is not where it ends, I will carry you with me, until I see you again.” Tough lyrics for a mom who blamed autism for stealing her child, for a mom who doesn’t know if she will in fact “see her again.”

For months, this song played on repeat in the car, house and on my phone or tablet. I cried every time. Until I didn’t.

One day, we were driving in the car and the song was on repeat — like always — and then I heard it. I heard her! She was humming along to the song. Weeks went by and that humming turned into sounding out the melody and then finally to her singing the song in her way. Others may not hear it, but I do; it’s in her own way, and it’s beautiful.

I sing along with her, and she smiles and I smile. It’s going to be OK. She’s showing me and singing to me: “I will see her again, this is not where it ends.”

Follow this journey on Melissa’s Facebook page.

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To the Woman at the Courthouse Who Saw My Son About to Melt Down

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Adolescence brought a nightmare of challenges into our autism home. Our Nicky is verbal, sometimes too verbal. His constant talking is a kind of stimming for him. It not only fills our lives with his incessant questions, it also causes people to misunderstand the magnitude of his autism. You know, if he can talk it means he can understand, right? Not necessarily.

School is full of triggers for Nick’s frustrated explosions and meltdowns. His most recent episode caused the destruction of a large piece of equipment, and we ended up in court. For a week, Nicky and I worried and stressed about his appearing before a judge. When the day finally came, I had no idea how it would go down. Would he start talking to the judge in his loud-mean-anxious voice and cause the judge to think he really was a criminal instead of someone with intellectual and developmental delays?

The first step in our court experience was to check in at a window in the hallway outside the courtroom. As we stood in line, Nick’s anxiety began to show in his voice volume and the things he started obsessing about. He saw a young woman with an unusual hair color. He started talking loudly about how “teenagers are not supposed to have that color hair.” I began to panic, wondering how I could get him calmed down.

Suddenly, a tall, dark-haired woman in front of us turned around and started asking Nick about Special Olympics. “What events do you compete in?” “Do you know my cousin?” Then she said, “My husband put this new game on my phone. I play it sometimes, but I can never figure out all of the puzzle. I bet you are good at puzzles. Could you help me with this one?” At first, Nicky acted shy and was slow to engage, but then he warmed up, and the two of them spent the rest of our time in the hall playing the puzzle game on her phone. I stood there wondering if I should cry, hug her or just stay quiet, so I didn’t interrupt the golden moment. When it was our turn at the window, we were told to go on into the courtroom. We weren’t even able to thank the wonderful stranger.

We had to sit through two hours in court, watching offenders pay their dues and explain their stories to the judge. I watched another miracle happen as Nick quietly sang to himself during that part of our ordeal. Eventually, we were called into the prosecutor’s office and offered a deferred prosecution. Nicky had held it together as long as he could. The poor attorney’s eyes grew large as she witnessed the beginnings of one of his escalating behaviors. We were able to get out of the building before any catastrophes occurred.

I don’t know if we will ever encounter the tall woman again. Maybe she’s an angel God sent to rescue us in this stressful situation. Maybe she is just a kind lady who has some experience with individuals with special needs. Whoever she is, my heart is filled with gratitude to her.

Nick the pilgrim

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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True Confessions of a Special Needs Mom at 3 A.M.

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I have some stuff I often think about at 3 a.m., when I should be sleeping, but hey, why do that? He’s just going to be up in an hour or so anyway. Let me sit and stew. It’s strange how at that time of night you are most honest with yourself and your own thoughts. Here are the latest ones bopping around my brain. Or the ones I can remember before I drifted off, only to be woken up again by the Kiddo 10 minutes later.

Confession #1: I don’t care what causes autism.

I don’t. I really want folks to stop asking my opinion on this. My kiddo is my kiddo.  How I am suppose to accept him for who he is while thinking at the same time, If only I had done this… Even if you showed me hardcore scientific evidence that this “something” caused it, I don’t care. What am I suppose to do? Hop in a DeLorean and go 88 miles an hour to my past and stop the autism from happening? It is what it is, so I’m happy to move on. I wish others around me would too.

Confession #2: No, I won’t be having anymore kids (so stop asking about it). 

The kiddo is turning 9 next week. We finally have a streak of no potty accidents. You think I want to go back to diapers? That’s just my flip token answer but in all seriousness, stop asking me this.

From the moment you deliver your baby, some smart-a** has to ask you while you are still in the hospital, “So when’s the next one?” Be lucky I was medicated, buddy. I wanted to slap you.  A parent knows when they are done. It’s not like I just forgot to have more kids. Whoops! Slipped my mind! I rocked a pretty good case of postpartum depression. Just when I was finally pulling myself out of that, autism popped up. I knew where I had to focus.  It’s a choice that worked for me.  You remembered to have extra kids? Good for you. You must of jotted down a reminder on a Post-It. So ya think maybe by the time I hit 50, folks might stop asking?

Confession #3: I really wrestle with that whole “God doesn’t give you more than you can handle” cliche.

God shouldn’t have trusted me so much. I couldn’t even remember to have more kids. How am I to be trusted with a child with special needs? I have no patience and cuss like a sailor on shore leave. Sarcasm is my answer to everything and yet I’m handed a kid who I am told won’t understand it. (I call BS on that one. He totally does. Autism Myth-Buster right there.)

I stick up for other autism parents when they are being judged and then I am judged for it too. God, we autism parents are getting the shaft sometimes. Help a girl out and let me win a PowerBall lottery or something. I don’t want pity. I want a nap.

Confession #4: Some of the things my kiddo has managed to do have been awesome surprises. 

We still have work, but he’s done more than I ever thought he could. I love it when he proves me wrong. I love it when he proves the jacka** early intervention therapists wrong who worked with him and gave me ZERO hope that he’d do anything. I often want to call them up and say “Can’t communicate?” and put him on the phone when he’s singing, then get back on and say, “How ya like dem apples?” Perhaps they said that to light a fire under my ass but honestly, I don’t think that’s the case.

So there you have it. The inner workings of my brain at an ungodly hour. Bet you expected more fries.

A longer version of this post originally appeared on Autism With a Side of Fries.

The Mighty is asking the following: What’s one secret about your child’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Gesture My Daughter Made That Brought Me to My Knees

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Last summer I wrote about being asked if I felt loved by my daughter Esmé. At the time I quickly responded that, yes, of course, I felt loved by Esmé.

And I do. I really do.

unnamed

I know beyond a shadow of a doubt that Esmé loves me deeply. I know it with the same certainty that I know I love her.

I know Esmé loves me by the thrilled sounds she makes to me.

By the way she sinks her head into the softness of my side.

By the way she looks meaningfully into my eyes as if she’s trying to transmit an important message to me.

I know by the way her emotions jump across the space between us.

I’m still so close to my daughter that I believe we often mistake each other’s body for our own. Her hands explore my mouth and hers, my fingers tickle her sides, and I laugh with delight as the tips of my fingers tickle me back; I need to remind myself to breathe when she cannot. More than four years of supporting her body, reading her motions, compensating for her weaknesses has made her an extension of my body. Her need has made me an extension of hers.

In many ways, we love each other as we love ourselves — in that honest, quiet, accepting way.

But I also know how this must look from the outside. Esmé doesn’t run to me and leap into my arms. She doesn’t speak the words, “Maman, I love you!” She doesn’t cling to my leg. Loving a mother in these ways requires understanding that we’re, in fact, two separate people. As a result, it’s the kind of love that grows in time. It’s the kind of love that develops slowly as children and parents move from the immediacy of newborn love to the acknowledgement of a child’s individuality all the way through to the respectful love that exists between adult children and their parents.

It’s a love that’s impossible without distance.

I’d be lying if I said I didn’t crave this other love from her. But I’m not certain I realized how much I craved it until last night.

In December Esmé kissed me for the first time. It was a tremendous experience. I knew she was trying hard to show me she missed me. She was more likely than not trying to do something she thought would please me. It was loving but also quite fleeting. In the manner of much of Esmé’s affection, it’s a “here one moment, gone the next” kind of experience. There’s no negotiation. Her love is ethereal. If you look at it directly it might disappear.

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I accept this.

I pride myself on loving Esmé the way you can appreciate an exquisite flower — carrying the image with me without needing to pluck it, without needing to claim it.

At the same time, it’s undeniably isolating.

I grew up in a family filled with a lot of love. We’re an effusive bunch. There are hugs, squeezes, back rubs, kisses, loving words — more than enough to go around. Most of my life I have savored that love. But I have learned to live with less of it in the last few years.

Part of me has stiffened against it, afraid that the kindness might unravel me. Another part of me is determined to explore how love can exist in the less obvious spaces — how you can nurture the subtle love that grows in between words, in the clinical actions that fill much of my time with Esmé. Like in the stillness of her body for the pause between an uncontrolled hand smacking my chest and a loss-of-tone head-butt against my lip and nose.

Recently Esmé has started to hug me. At first I mistook it for a flinch — an indication that she did not want to be set down — or a little snuggling in to get comfortable on my shoulder. But, much in the manner of her kisses, she’s kept repeating the action to be certain I understand her intention. The first time it happened clearly was after I lifted her from someone else’s arms. She’d wanted me in a way I’d seen other children want their mommies but never experienced myself. She’d indicated her pleasure at our renewed closeness by squeezing me, letting go, sitting up and then returning with a squeeze.

I so appreciated it but didn’t want to look at it directly for fear of this love slipping between my fingers. “Oh Ezzy, Maman really loves your hugs, thank you!” I’d said. And we moved on.

She’d repeated the hugs a few times again over the last few weeks but not with great intensity. Until last night.

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Last night she was struggling, having been awake since 1:00 a.m. with only a brief nap. I brought her into her room to change into her pajamas. I sat on the floor in front of her dresser and stood her up next to me, with my left leg and arm supporting her. I asked, “Ezzy, what color pajamas do you want tonight?” She became giddy at the prospect of her pajamas, smiling and clinking her little fingers against her teeth.

I held up a set, “Green?” She turned toward me and smiled bigger. “OK, green it is, my love.” She suddenly lunged toward me; I braced myself anticipating an unintentional smack. Instead, she wrapped her slender unruly arms around my neck, settling her mouth next to my ear as if she was going to whisper a secret to me. And then she squeezed, hard. The left arm working harder than the right, as usual.

In that moment I realized with such clarity how difficult it must be for her to do this… the coordination alone is a feat, not to mention the strength to wrap me up in her grasp.

In that moment I understood in my heart that she hasn’t been avoiding hugging me for lack of desire. She’d been unable to figure out how to do so.

When she released me and leaned back to look at me, a look of pride on her perfect little face and a clump of my hair caught in the stiffened fingers of her right hand, I crumbled, crying. Then I quietly hugged her again. She squeezed me back again, sensing my need.

We held each other for a moment and then let go.

 A version of this post originally appeared on The Cute Syndrome.

Hillary Savoie, PhD, has blogged about life with her daughter Esmé since September 2012 on The Cute Syndrome Blog. Hillary is also the Founder and Director of The Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of rare disorders like PCDH19 Epilepsy and SCN8A Epilepsy. She is also the Chief Communications Maman at the Feeding Tube Awareness Foundation.  Hillary tells the story of her family’s journey through her daughter Esmé’s genes as they try to find a diagnosis in her story Around And Into The Unknown, available as an individual e-book and as part of the paperback anthology 6 of 1 Travel.

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