When We Realized Why My Sister Understands My Son With Autism So Well

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I am the oldest of three sisters. One sister is two years younger than I am, and one is five years younger. I was born a social rule follower, always working towards being an appreciated member of the team. Middle Sis was… different. As a baby, she always wanted to be held by our mom, and would cry and fret if she was set down. Others couldn’t hold her, it had to be Mom. No one could kiss her except Mom.

As she grew older, she was still… different. She would often be in her own world, not hearing her name when called, and you would have to get in her line of sight to gain her attention. She was not motivated to be part of the family team, to follow the rules like I did. She just did her own thing. It was very confusing for me as a child.

I once drew in black pen on our concrete patio. My consequence was to clean it up, and after scrubbing it off I never drew on anything I wasn’t supposed to ever again. Middle Sis preferred crayon as her artistic media, and walls as her canvas. All the forced scrubbing in the world did not deter her.

When she crayoned on the neighbor’s garage (orange circles on white stucco) the whole family helped clean it. I was 5 and furious. What was wrong with her? Why didn’t she learn?

It wasn’t that she wasn’t smart. When I entered elementary school and started learning to read, I came home and taught her. She was reading along with me at 3. She had a retentive memory especially for comedy, and could be counted on to quote the perfect line at the perfect time for maximum hilarity.

As we grew up, I watched her mature, how she struggled in some ways and triumphed in others. I grew to appreciate the full complexity of her and all her facets, the ones I understood and the ones I didn’t. She became one of my best friends.

She has been extremely supportive on our journey with my son, the Navigator, offering me a shoulder when needed, timely words of wisdom, and important new perspectives. She has also been an unexpected support to the Navigator, more than just the loving aunt.

As we learned more about the Navigator’s autism diagnosis and what it meant for the Navigator, she began to identify similar characteristics in herself and I began to see similar characteristics in him that I had seen in my childhood. After reading blog articles, she would tell me that she recognized certain behaviors or feelings that I described in the Navigator.

And he adores her. She knows exactly what to say to him at exactly the right time. She insists that he call her “Aunt Genius” and he thinks it is the funniest thing ever. It has become a wonderful thing when he does something and he doesn’t quite understand why he did it. “Don’t worry about it,” I will say. “Aunt Genius used to do that when she was a kid, too.” He smiles and is obviously reassured. If someone as cool as Aunt Genius does it, it can’t be that bad.

I believe that one of the reasons we are able to meet the Navigator’s needs as well as we do is because I already had experience unconditionally loving a person who was… different. What confused me as a child I now celebrate, which makes it that much easier to celebrate the same in the Navigator.

I am doubly blessed.

This post originally appeared on Autism-Mom.

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I Used to Live in a World Where I Wished Death Upon My Own Child

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I can tell you the exact moment that I fell in love with my son.

It was two days after his first Christmas, and I peeked in at him before crawling into bed. He was lying there asleep on his belly, just like he had every night since the day we brought him home from the NICU when he was 5 weeks old seven months ago. I smiled and thought to myself, “I love him so much,” as chills ran over my skin. It was completely involuntary and totally in spite of myself.

Before that moment, I had never felt joy in Gabriel’s presence — only sadness, anger, fear and grief. I had held him so many times, my body wracked with sobs as I begged for God to take him home. I wanted Gabe to be free from his body and us to be free from a future burdened with caring for a profoundly disabled child. So many factors played into my inability to bond with Gabe, to love Gabe: the times we had said goodbye in anticipation of losing him in the NICU, the weeks without being able to hold him, feeding him through a tube instead of putting him to my breast, months without a smile or any sign of him knowing us and the overwhelming sense of him being broken. I was broken, too. He had broken me, and I him.

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A world where you wish death upon your own child is a strange, foreign place to be, but I lived there for eight long months. Now, back among the land of the living, I feel no guilt over that province I once inhabited. Grief is a strange and complicated thing. It can make us feel and wish and pray for things that seem unimaginable. My eyes have opened and I understand pain, raw, dark and deep, in a way I never have before. For months, I felt like I couldn’t breatheOnly now, as I find myself in a place where my weary soul is finally finding rest, am I able to catch my breath.

Early in this journey, another mom of a child with special needs entered my life at the exact moment I needed her. Having navigated the same turbulent waters, she told me something that has continued to resonate with me since the moment it reached my ears:

For a long time, you will feel like you’re drowning. It will be dark and the waves will crash around you as you struggle to keep your head above water. You will grow wearier and wearier until you are certain you can no longer keep yourself afloat. Then, at that exact moment when you have surrendered, when you have taken that last gulp of air and sunken beneath the surface, succumbing to the ocean trying desperately to swallow you whole, you will feel the land beneath your feet.

I am so thankful to be able to say that I have found the shore. The waves are still crashing, but the sand is warm, and the sun is peaking over the horizon.

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This post originally appeared on House Made Home.

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Why Hearing ‘You’re Stronger Than Most People’ Makes Me Feel Awful

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Recently I was trying to explain to my hubby why it sometimes gets under my skin when people tell me (regarding Esmé) things like, “I don’t know how you do it… you’re just stronger than most people.” He said that I should take it at face-value and just accept the compliment that it is no doubt meant to be. I know he is probably right, but the emotional fact remains that it makes me feel sort of awful.

I suppose it gets to me for a number of reasons, but the worst of it is because I feel a bit like it is insulting to Esmé, like others night see her as “too much” work… and suggests that they don’t see the particular and unexpected joys that can only only come (in at least equal measure to the difficulty) from life with a child like Esmé — a child who insists that you take her as-is on her terms, a child whose every inchstone is a major celebration, who constantly reminds us of the goodness in the world.

It makes me want to shake the person and say, “Yeah, it is totally hard sometimes. But it could be 1,000 times more difficult… And, honestly, what is the alternative? I mean, really, just because it is hard, what am I going to do? Leave her at the firehouse? Is that what you would do with your kid?”

What most people would do is cry, be terrified, yell and scream… and then do the very best they can with what they have to work with (and maybe cry and yell again).

Telling people in somewhat unusual or trying situations that they are naturally “stronger” or better equipped to handle their difficult situation than other people is almost a denial of the very real and often overwhelming emotions that parents like me feel while trying desperately to be “together”… trying to accomplish something beyond just surviving day to day, trying to sort out some kind of stable daily life.

It also overlooks the tremendous amount of work that goes into life with a child who is medically fragile — work to construct some kind of structure that nurtures and challenges a child who lives in a precarious world where a simple misstep (a lost night sleep, too much stimulation or exposure to a cold) might mean seizures, hospital stays, lost milestones.

It overlooks the work in takes to maintain physical, emotional and intellectual health in the face of building a life around the never-ceasing needs of another individual with an uncertain future… as well as the work of the intricate scaffolding of people who we have to rely on to make it all work: therapists, doctors, nurses, family, friends — people who we’d rather not need to help us raise our daughter, but, honestly, cannot do without.

I am absolutely not strong enough to do this on my own. I work hard to make myself stronger every day, but I constantly fall short.

The idea that I am somehow naturally stronger than other people would be in my situation — that I am in some way built for this — is essentially a disavowal. Anyone’s life can go from status-quo to real life-threatening chaos in a single step that turns into a freefall. Because it can… and that, friends, is terrifying. And because that reality is so terrifying, most people prefer to think such things happen only to people who are somehow prepared for them.

But they don’t.

They happen to people, just regular peopled, imperfect people. People like me.

People like you.

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 Beautiful Moment I Discovered My Son’s Outlet for His Emotions

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Music is a powerful medium, isn’t it? It can lift you up in an instant or leave you teary-eyed as you ponder a memory, the sound washing over you.

We love music in our household and there is no musical genre where we fear to tread. Rock? Yes, sir. Reggae? You bet! Experimental euro thrash metal with a hint of ’80s synth? OK, admittedly that’s probably a stretch, but you never know until you know, right?

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I remember my heart swelling with pride when young Nicholas first gestured me to crank the volume on his favorite Bob Marley track.

Now, don’t get me wrong… we are still parents of a young boy. Some songs receive far more airplay than they deserve. A certain melodic ditty springs to mind involving a square-pants-wearing, underwater-dwelling loofah… but as a parent I suppose that comes with the territory.

However, not even the mighty yellow sponge has been able to knock Nic’s latest personal chart-topper from its perch. The answer might surprise you… Nikolai Rimsky Korsakov’s “Flight of the Bumblebee” is his latest obsession. While this piece of music is beautiful, it was his reaction to it that caught me off guard.

Nicholas has mastered the art of YouTube navigation. Even though he cannot spell or type fluently, he is able to find his beloved piece of music through a series of searches done from an impressive memory. We have endured a swarm of musical variations of this piece of music. I say endured, because I’m sure parents of children on the spectrum can agree… our kiddos are not afraid to hit the repeat button. Repeatedly. But I digress…

Hoping to negotiate a change of music on a particular afternoon, I marched into Nic’s room. I found him on his bed, transfixed to the screen. All pretty standard stuff, until I noticed that he was crying. Tears streamed down his cheeks. Immediately I started the panicked inquisition.

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“Nicholas, what’s the matter, my boy?” “Are you OK?” “Where does it hurt?” His only response to any of my questions was a singular one; he shook his head “No” All the while he watched and listened and cried. I felt helpless; communication can still be a barrier and although Nicholas is an affectionate little guy, he is not one for huge displays of emotion. I took the device from his little hands and held him tight. He was quiet now, happy in my arms.

Our boy had just had a massive emotional response to a piece of music. It was beautiful. In our world where “hellos” and “goodbyes” can be robotic, “goodnights” often sterile and “I love you” usually parroted back to us, his expectant parents, these displays of emotion are parental gold.

Nicholas might do things in his own quirky manner; he might sometimes struggle to communicate verbally with us, but there is no denying a feeling. As different as we all are, we have that in common.

Bob Marley once quipped that the great thing about music is that when it hits you, you feel no pain. I’m happy to announce that when it hits us, we simply feel…

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How Two Schoolyard Dumpsters Symbolize My Heartbreak and Hope as a Parent

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Every morning when I drop my son, Austin, off at school, I can always count on being greeted by the same two faces. Day in and day out, rain, snow, sleet or shine, they are there, waiting for our arrival. They are older and a little weathered now but still stand tall with strong backbones. Their names are Bruce and Betty, and I can always count on them to be sitting with anticipation.

Well, Bruce and Betty is what I have named them. In fact, they are not human — but they do have faces. You see, Bruce and Betty are large brown dumpsters.

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They are behemoths with their mouths open wide, waiting for whatever crap is coming their way for the day. It doesn’t matter how bad their previous day was, the sly grin on their faces is always the same, welcoming us to their courtyard. They stand there, stately, holding predominate positions at the back of the school near the cafeteria. On warm days, their fragrance is intoxicating, presenting to your nostrils what remained of yesterday’s cafeteria gourmet fare.

Most parents never get to meet Bruce and Betty. In fact, they probably don’t even know they exist. You see, most parents never come around to the back of the school. When they arrive to drop off or pick up their students, they arrive at the front of the school where the flag is located, waving as a banner of identity for all those who enter through the front gate.

Not us. Special needs parents like us, have to drive around to our designated area, which is at the back of the school. For us, our gate of entry is directly between Bruce and Betty, where they stand like sentinels guarding a secret passage. Our children must begin and end their school day between Bruce and Betty, between the dumpsters.

To me, Bruce and Betty are symbolic. They represent all of the dreams we had for our children before they were born that have shifted due to their disabilities. They represent what some perceive to be our place in society, relegated to entering through the back door, away from the “normal” people. They also represent the feelings of hope that sometimes elude parents of children with special needs.

Yes, sitting at the back of the school between Bruce and Betty can be heartbreaking. Some days it’s no big deal — I see Bruce and Betty as just two objects standing in their assigned positions. Other days, they serve as a reminder of what has been lost.

But I am also thankful. I am thankful for those who are willing to stand between the dumpsters with us — teachers, teacher assistants, aids and therapists — all choosing a career in which walking between Betty and Bruce are twice daily activities. I am also thankful for administrators and principles who work with parents like us to find ways to make attending school easier for our children. If entering through the gate of Bruce and Betty is the best way for my son to get in and out of his school, then that is what we are going to do.

I want to say thank you to everyone who have had a positive impact on my son’s life. You volunteer for jobs that many pass over so that you can make a difference in the lives of special children. You work out ways to reduce stress levels associated with attending school. Not only are you making a difference in children’s lives, you are making a difference in the lives of their parents as well.

And to you, Bruce and Betty, thank you for standing guard over our children. We will see you again next week.

(P.S. – You need a shower! You stink.)

This post originally appeared on Eric Parker Blog.

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What Nets and Acceptance Have in Common

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After doing quite a bit of reflecting over the past couple of weeks, I have decided to ignite a challenge.

The first bit of reflecting came from my most publicized blog post, “#42 – The Trouble With Peers.” It was reposted on The Mighty, Autism Speaks and Godvine. I stopped counting this week when I realized it had more than 20,000 hits. I was amazed — I knew it was a great story, but it was incredible how many people contacted me and said,

“That is my child.”

“That was me.”

“That is my grandchild.”

Or some other version of that sentence. You know what? It made me sad. It made me sad that there are so many people in our world that feel or have felt that they are not part of a group. For the record, you can all be in my group.

My second piece of reflecting came this week. I stood up to some folks and brought an inequality to light. I was amazed at how many people contacted me and said,

“That is also my child. Thank you for saying something, even if it doesn’t make a difference.”

One woman contacted me and said, “It’s a big machine, and you have more supporters than you think. Everyone is afraid standing up against it will have adverse effects on their kids. That’s why they stay quiet. I would love to see someone do something about it, and I guarantee a lot of people will come out to support them.”

What? Since when did we become afraid of standing up to a person or small group of people who impose inequality on other people? When did we become so apathetic that we are not willing to stand up to one person? One.

I also have a teaching blog that is on hiatus now (seriously, who would have time to write two blogs?). All of this reminded me of a blog I wrote a couple of years ago and for the third time, I reflected. I asked my students to write a personal essay. In that essay, nearly all admitted that they were “nerdy” or “weird.” It struck me as funny, because I didn’t think any of them were nerdy or weird.

I reassured them that it’s OK for them to be who they are. They looked at each other as I told them that they collectively held many of the same fears. They smiled at each other. I asked them to tell me about why they felt afraid to share their true, authentic selves. They opened up. It was one of those moments as a teacher when you realize what you were going to teach is not nearly as important as what you are about to teach.

Nearly all of them expressed their relief at attending college. They finally felt comfortable being who they “really are.” I asked what had stopped them before. For a minute, none of them really had an answer. Then, one student piped up. “Although I don’t really know, I know I didn’t want to be made fun of. So I just did what the people who made fun of people expected me to do. I became who they wanted me to be. But the whole time I was really miserable.”

I responded, “OK. So, these ‘bullies,’ tell me — how many were there? How many of the students dictated who it was OK to be?”

“I don’t know… two, maybe three.”

‘How many students were in your class?”

“85.”

“So, let me get this straight — 82 of you pretended to be something you weren’t just to please three of your peers?”

They nodded. Let me tell you, all of them nodded. It opened the floodgate. It opened the gate to talk about mean people. Why is it that mean people win? I’m so sad when I can’t answer my students’ questions. This became one of those moments where you have to talk about grace, forgiveness, kindness and compassion. It’s the same discussion I have with my 10-year-old and 12-year-old. It’s the same discussion I have with my husband about the meanness we encounter as adults.

I have no time for it, and I certainly don’t waste much of my positive life and energy focused on those who choose to be mean. I told my students, “Don’t hold on to hate. Allow yourself to forgive. Never allow your words to be full of vitriol. Think about your own suffering when people are hateful toward you — don’t put it out there in the universe. You get what you give. Give hate and anger and you will be more likely to receive hate and anger. Give love forgiveness, kindness and compassion and you will receive love, forgiveness, kindness and compassion.

Then this morning during worship, I knew what I had to write about. Nets. The casting of nets to gather others. For the fourth time in the past week, I was thrown into a deep reflection. The net metaphor is used often in describing the gathering of something.

So this week, I challenge you to throw out your net.

Your net of love.

Your net of forgiveness.

Your net of kindness.

Your net of compassion.

What if the 20,000 people who read that blog post threw out their nets?

What a difference we could make.

This post originally appeared on 366 Days of Autism. Read more 366 Days of Autism posts on Facebook.

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