My Brother’s Drawings Say the Words That He Can’t

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My twin brother, Daniel, has been drawing for as long as I can remember. It all started with logos from television shows and his favorite restaurants when he was a child. Give him a pen and a piece of paper and he will create a masterpiece within a few minutes. His drawings are incredible — jaws literally drop when others see his work.

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What a lot of people don’t know about Daniel’s artwork is that it always has some sort of strong emotion of his attached to it. Some of the moods behind his drawings are extremely twisted, silly, or scary, while others are genuine, loving, and pure. Dan does speak, but he doesn’t always know how to use his words appropriately. He is now 23 years old and the more he has grown up, the more he’s used his drawings to communicate the feelings that he couldn’t verbally put forward to my family and others around him.

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A lot of the time, his drawings feature a character from a television show that he’s in the phase of watching at that moment. Those television characters, as well as the messages he places in his drawings, are often metaphors for the situation that he is dealing with or the mood that he is currently feeling. For example, when he feels that my mother is being a little too protective or controlling him more than he would like, he calls her a puppeteer and then he then draws himself as a puppet with a big open mouth and some strings.

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Other times, Dan will actually draw the person that made him feel a certain way. The person that looks angry in his drawings is the person that made him feel upset and the person that looks happy is the one that may have made a fantastic impression on him.

When my father annoys Daniel, he draws him with a red face, a big mouth and steam coming from his head. One time, I was watching the television and Dan came up, took the remote, and changed the channel. I then said, “Hey! I was watching that!” Right after that incident, Daniel drew a picture of me with a giant mouth, pointy eyebrows, and a speech bubble that contained what I had said to him.

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It’s been  fascinating to see that my brother uses his drawings not only as his catharsis, but to also show my family what we have done to put him in his current state of frustration, happiness, confusion, or amusement. He recently has shown interest in having my family draw little pictures of how we feel back to him during an argument. My parents and I usually review the pictures the next day or so (with Daniel) and we all just find enlightenment, as well as humor, in what he has drawn. He finds his own pictures to be funny to look at after his serious situations have had time to blow over.

I feel blessed that my brother has found a way to express his feelings and desires to us when he has a difficult time communicating that to us verbally.

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To the Person on the Other Side of the Table in Our Son’s Placement Meeting

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The tension in the room was palpable. We both came to the table with a chip on our shoulder — You because I was questioning too much, and Me because I didn’t like your answers.

The problem is that we come from different sides of the track, you and I. You’re all about the purse strings, while I’m all about the heart strings. You see my son as a burden while I see him as a blessing. You see him as an adult who’s a fiscal drain on your limited funds while I see him as my baby boy who’s as deserving as the next. You’re all about the quantity while I’m all about the quality.

You see me as irrational while I see you as un-emotional. You feel I’m asking for too much, that my expectations are too lofty. You try to convince me we should be happy with the minimum. You make me feel greedy for wanting it all for my son. You see me as stubborn. You also see that you will never convince me that he’s not deserving of his own room in his current community where we can be active participants in his life. He’s deserving of all of it! Why can’t he be afforded the same opportunities as anyone else?

If only we could trade glasses for even a day. If you could see my son the way I do then you would fight. You would do everything you could to ensure he has a safe and happy environment. You would understand my fears for his uncertain future. You would do whatever it takes.

I’m not sure we will ever see eye to eye, but that’s why I’m glad you met us. You need to see that there are faces behind the names that come across your desk. It’s easy to say no to a piece of paper, but when you have a living, breathing family in front of you it has to touch you. I pray we touched you in some way.

I’m resilient. You saw me cry, but don’t confuse that with weakness. I’m battered and bruised after our meeting, but I’m not down and out. We’ve faced  greater adversaries than you, and some how, some way we always emerge victorious.

So excuse me while I pick myself up, brush myself off and figure out a way — there’s always a way.

Oh, and give me back my glasses, I can’t see a thing through yours.

This post originally appeared on Monkey Business.

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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…

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. 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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