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.

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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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The Popular Song That Helped Me Understand My Brother’s Disability

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My 20-year-old brother, Jarrod, was diagnosed with severe autism and intellectual impairment when he was 2 years old.

The breadth of such news was a shock. Eighteen years later, he still speaks with slurs and mispronunciations.

Speech therapists came and went. ASL was tried and failed. Picture books have been thrown at my head in frustration.

Jarrod has always conquered such challenges with surprising vigor and determination despite his limitations. Which is always why I never give up on a challenge either. My brother is a constant inspiration.

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But despite such challenges and speech impediments, he does talk. He communicates via his own means. He communicates using music.

Jarrod was 13 years old when my parents bought him his own CD player (he kept stealing my walkman and these were the days before iPods were a must-have). One of the CDs he loves to play is Urban Hymns by The Verve.

At first, I didn’t think much of these songs. I just thought, “Phew! He is busy.” But he kept playing specific songs over and over again on full blast over the years, which is quite noticeable.

The song “Bittersweet Symphony” by The Verve was the first song I noticed and the lyrics are powerfully profound when coming out in my brother’s disjointed voice:

“Well I never pray,

But tonight I’m on my knees, yeah,

I need to hear some sounds that recognize the pain in me.

I let the melody shine, let it cleanse my mind, I feel free now,

But the airways are clean and there’s nobody singing to me now.

No change, I can change,

I can change, I can change,

But I’m here in my mold.

I am here in my mold.

And I’m a million different people,

from one day to the next.

I can’t change my mold,

No, no, no, no, no.

I can’t change,

I can’t change.”

And the message was quite simple: I cannot change who I really am to fit your mold. I teared up when I realized this, and in a way, this song did help me accept my brother the way he is. Whenever I hear this song on the radio I roar for us both and my heart thunders.

Yep, that’s it, society. We will never give in. We will never change our mold. My brother is my brother. And I am me.

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4 Ways We Respond When Strangers Stare at Our Son

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People stare. They just do. Ethan hops, hits his chest, claps loudly, squeals, squeaks, moans, says strange words and usually has his iPad playing a movie loudly while he holds it to his ear.

It used to really bother me to be stared at all the time. I assumed people were irritated by Ethan. I assumed they probably thought I was a bad parent with a brat for a child. I would leave public places feeling anxious, overwhelmed, stressed, depressed and angry.

Over the years, I’ve come to a few conclusions. People want to be told what to think, they want to be shown how to interact and how to react to Ethan. We’ve developed a few habits that make interacting with the rest of the world easier.

1. We wear autism shirts. I know it sounds cheesy but when they have it pointed out clearly in big letters, the reaction from strangers is overwhelmingly more positive, patient and kind.

2. We make eye contact and smile. It helps others see we know they are staring and we have feelings.

3. We make jokes. Like when he walks right up to your basket and grabs the Oreos, we will say something like, “Get the milk, too!” followed by a brief explanation, “This is Ethan. He has autism. He is still learning about personal space. Sorry about that. Thank you for being patient.”

4. We try to utilize and see interactions as teaching moments. When kids stare, I might say something like, “This is Ethan. He has autism. He is making some really silly noises, isn’t he? Have you ever met somebody with autism?” Then I explain it to them briefly and tell them something “cool” about Ethan and how he uses his iPad, and most of the time, they come to view Ethan as a pretty cool dude.

I’ve come to see that people stare at me as much as they stare at him and it’s my job to lead by example. Instead of ducking and hiding, I take the opportunity to hold my head high, walk with confidence and show love and affection.

I’m not ashamed of my child. I’m not going to hide him from the world or avoid going places. If the world is ever going to be aware of autism or better yet, accept autistic individuals, they have to be given opportunities to interact with them.

A version of this post originally appeared on Autism Strong.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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A Man Called My Son 'Retarded.' One Stranger Wouldn't Stand for It.

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When my son Ryan was 5, his destructive behaviors escalated, and he always appeared to be crawling out of his skin. He was never still, never comfortable, never happy, never sleeping, always angry and extremely physically aggressive. He punched, hit, bit, spit kicked. We still have scars, both emotional and physical, from that time.

One thing that would temporarily soothe him was motion: riding in a car, a swing, being on a train or pulled in a wagon. The movement somehow helped center the frequent sensory explosions that came at him from the world.

One day, I took him to a mall; they had a train set up for kids, and I wanted to see if he would enjoy it. Part of me was desperate for Ryan to experience some “typical” activities other children his age engaged in. I intentionally selected a day during the week, when it would be less crowded. I was greeted in an incredibly harsh way by the gentleman running the train — let us call him “Caldwell.” Caldwell looked tired and angry and was not the type of person who should be interacting with children. I should have listened to the maternal instinct inside of me that recognized the emotional red flags, but getting Ryan out of the house at that time was such an exhausting accomplishment, I stubbornly decided, mean man or not, my son would ride that train.

As soon as the train started, Ryan started stimming. For those who don’t know, self-stimulatory behavior, also known as “stimming” and self-stimulation, is the repetition of physical movements, sounds or repetitive movement of objects — common in individuals with developmental disabilities but most prevalent in people with autism. In Ryan’s case, when he’s happy, he flaps his arms, bounces up and down and makes loud sounds.

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The second Ryan started bouncing, Caldwell ran (literally ran) over to him (as the train was moving) and screamed at him to sit down. At first Ryan didn’t realize Caldwell was directing this verbal attack at him, but it happened repeatedly until finally his tone and close proximity scared Ryan, who immediately started to melt down.

I’ve been able to exhibit patience and professionalism in the face of adversity many times in my life — this was not one of those occasions. I ran like hell towards my son, grabbed him off the moving train (Caldwell was now yelling at me) and waited until the ride was over. When it was, I approached him with my screaming child in my arms, who was at this point pulling my hair, biting my face and crying in sheer terror. I explained to him that Ryan had special needs and he was excited to be on the train; his bouncing was stimming, which meant that for a few minutes, he was comfortable and happy. I wanted to try putting him on the train again, but Caldwell said no. His words and I quote: “Retarded kids shouldn’t be riding my train.”

It was one of those surreal moments where the room stops and things go silent. I couldn’t absorb his words and kept thinking, “Did he really just say that?” When I came to, the Jersey girl inside of me exploded, and I lost it. I wasn’t patient or professional in my delivery.

Ryan continued his aggression as a small crowd emerged. This was before cell phones or all of this would have gone viral on You Tube, and while I felt humiliated and wanted to leave, I also felt paralyzed. Caldwell walked away from me while I was screaming at him, and I just sat on the floor and started to cry — I mean really sloppy crying. This only exacerbated Ryan’s emotional breakdown. Boy, were the two of us a sight. I still have the scar on my leg from where he accidentally kicked me and drew blood.

It was at this moment that a woman came over to me. Let’s call her “Madison.” She hadn’t seen what had happened but saw me on the ground sobbing with a hysterical child in my arms and blood coming through my pants. Madison sat down next to me and started talking in a soothing voice to me but all the while looking at Ryan. She told me in this soft, hypnotic voice that she was the mother of a child with cerebral palsy. She had a couple of hours to herself each day, and she often came to the mall. As she told us her story, she handed Ryan some chips, and he began to calm down, and I told her what happened. She stood up, took my hand and led me right to the general offices in the mall. Madison demanded to see a manager and told him the story of Caldwell and Ryan and the train incident. The manager instantly retrieved Caldwell, demanded he apologize to me and told me he would be “severely reprimanded.” I, of course, insisted he be fired and threatened to call my attorney.

The manager handled me well. He told me he could only imagine how hard things were and how hurt my feelings must be. He gave me his business card, a $100 mall gift card, patted Ryan on the head (FYI: Never do that to a child with autism) and told me to please come back to the train and give it another try anytime and for free.

Madison stayed with me through this ordeal, and when we said goodbye she said something I will never forget: “You can’t expect people who don’t experience the pain we do on a daily basis to get it the way we do. Only other parents like us can truly empathize.”

I didn’t recognize it at the time, but in this one traumatic event, I experienced both sympathy and empathy. Caldwell was a terrible person, the mall manager sympathized with the situation, and Madison knew how to help me because she was able to experience true empathy for me.

Madison’s words have stuck with me over the years as I often find it difficult to empathize with people in situations that don’t rise to the level of autism. It’s difficult to get to the pain of someone who’s complaining about something I see as routine. It becomes isolating for a special needs parent to be around parents of “typical” children because everyday conversations come up and you can’t participate. Bring up the Caldwell and the train story at a playdate and you can only imagine how awkward it becomes. Sympathy, pity, discomfort all over the place — but not empathy.

As a teacher and school administrator I felt a special connection to my students and families affected by disabilities. Some would say at times I favored them — that was my empathy shining through. As a special needs attorney, I will organically empathize with clients and families, and I believe that will enable me to serve them at a deeper level. Dr. Daniel Goleman, a famous psychologist and author on “Emotional Intelligence,” wrote that “a prerequisite to empathy is simply paying attention to the person in pain.” I try to do this each and every day with everyone I encounter. It comes naturally to me in some situations and is more challenging in others. But I pay attention to people’s pain.

Madison taught me to seek out my fellow special needs warriors and be there for them. I pay her empathy forward as often as I’m able to. I urge anyone reading this to pay attention to the special needs families in your own communities, at your schools, at your restaurants and especially those melting down publicly somewhere at a mall, grocery store or Target. We’re everywhere, and if you show the slightest bit of kindness towards us, even if you can’t quite understand our pain, we will never forget it or you.

This post originally appeared here.

 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. 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 Submit a Story page for more about our submission guidelines.

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To All the Grandparents of Children With Autism

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I’m blessed in my life; I have a strong support system with my family. If it wasn’t for my parents and my sister, I don’t know how I’d have managed half of what I needed to do for my son Emilio. They were (and still are) always there for me and for my kids.

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But I also think of my friends whose children never had a chance to meet or get to know their grandparents. Grandma and grandpa received their calling too soon. I have you in my heart as I write these words.  I’d like to think that somehow, they’re watching from the heavens above guiding you all on your journeys.

And so, I’d like to pay a tribute to all the grandparents of children with autism.

Thank you for being the rock that kept us grounded when our world was turned upside down.

Thank you for not only understanding your grandchild’s diagnosis but for understanding our pain as well.

Thank you for adapting your home before anyone even asked you to.

Thank you for the times we found unexpected cooked meals, a clean house and the laundry done; we are grateful.

Thank you for being there to pick them up at school after a meltdown because we couldn’t leave work.

Thank you for coming with us to therapy for the moral support and so we didn’t feel alone.

Thank you for keeping them overnight so we could sleep in; the respite was much needed.

Thank you for your encouraging words and your endless supply of unconditional love to all of us.

Thank you for making more than one meal because you wanted to make sure they ate something.

Thank you for buying identical items to keep at your home so we didn’t have to carry them around.

Thank you for taking the time to understand the triggers that can cause a meltdown.

Thank you for the countless times you held us while we wept out of frustration and helplessness.

Thank you for not judging us when we lost it.

Thank you for educating others about autism because we know it affects you too.

Thank you for always staying strong and never showing your fear or concern in front of us.

We couldn’t have done this without you.

Your strength and unwavering support is what got us through this.

We shine a spotlight on you because you all have played a significant role in the lives of your grandchildren.

Please never forget how precious you are to them and to us.

The month of April is all about raising autism acceptance and understanding, but for every family in the autism community, we know we do this every single day of our lives.

Thanks for stopping by.

This post originally appeared on Speaking Autism.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

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Every Special Needs Mom Deserves to Hear This

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I just came from an elementary band concert and I saw a fellow autism parent there who was with her son for his first band concert. As I watched her, this friend of mine, I was thinking, I bet there is no one else here, except for her husband, who knows how hard she is working right now. To an unsuspecting observer, she was just a mom with her son. To me, she looked like she was paying attention to his every word and body movement… to his very aura, if you will. This is what I call the “Behind the Scenes” of autism.

It deflates me when I’m somewhere with Evan and people say, “He looks like he is doing so well.” Yes, thank you, he is doing so well, but what you don’t see is how hard I have to work to keep it that way. I monitor his environment and his body language constantly to avoid any potential trouble, and this task is exhausting. I have to do it at home, too, though it is much easier in our own space, as most of our variables are known.

When I saw this mom, I knew how hard it was for her. She stopped by to say hi, and I told her she was doing a great job. I hope she heard me… I hope she understood that I meant it, and that I probably don’t understand the whole of her struggles but that I get where she is coming from and how hard this night probably was for her. I understand how risky it was for her to let go and allow her son to have his moment on stage with his band. I felt her stress and how on edge she was. I understand that the hurdle they jumped tonight was on a whole other level, and I hope next time that hurdle doesn’t feel so high.

I told this mom that she was doing a great job because that is what I want to hear. When I make it look easy, remember that it usually is anything but, and more days than not, I feel like I’m not doing enough. It might look like I’m putting this puzzle together with crazy glue, but it’s more like washable school glue that will fall apart at the slightest breeze.

So to all the superhero parents out there I know: keep up the good work. You are doing a great job.

Mother and young son with heads together smiling
Photo source: Thinkstock Images

This post originally appeared on The Autism Chronicles.

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. No gesture is too small! 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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