What I Wish I Could Tell Everyone Who Asks, ‘What Functioning Level Is He At?’

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It’s no secret that Brian is an Internet fan.

He can Google-search with the best of them. He can hack people’s passwords. It’s a big joke (but not a joke, because it’s true) in his classroom that teachers cannot enter their passwords in front of him because he will quickly memorize them and add apps on to his teacher’s iPads. He can run up big tabs on my Kindle if left unmonitored.

My favorite thing that he does though is dub one of his favorite 64 Zoo Lane episodes with the audio from Sesame Street: Kids Favorite Songs 2 (another favorite).

It’s amazing to watch him. I’m truly in awe. He has it timed just right so that the zoo animals are crashing when the Sesame Street video has a dramatic clip about the meatball falling off the pile of spaghetti. He times it so the zoo animals are eating watermelon at the same time Snuffy finally gets to eat the meatball he’s been chasing.

And my favorite is when he loops the same three seconds of the zoo animals cheering to when all the Sesame Street characters sing “Elmo’s Song.” The 64 Zoo Lane animals truly look like they’re singing “Elmo’s Song.”  So much so, that the first time I saw him do it I didn’t realize he had two YouTube videos going on simultaneously.

Things like this just blow me away. It doesn’t matter how many times he does it, I drop everything I’m doing to watch him. He’s a mastermind.

Often, people who don’t know much about autism and are just meeting myself and Brian ask me innocently what functioning level Brian is at. It’s such a difficult thing to answer.

The standardized evaluations tell us Brian has “moderate-to-severe” autism. Brian is still working on 1st grade sight words in school. He needs help with self-care skills that most kids mastered about four years ago. Expressive language, and sometimes receptive language, are extremely tricky for him.

But he can work any electronic you give him, dub videos with precision, give you directions to places he’s only been once, sing songs after just hearing them a time or two, and memorize motivating words (like “Ratatouille,” “Dreamworks,” “Curious George,” and so on) and spell them.

He is utterly amazing and he really can’t be put into a box of functioning levels, much like all of the spectrum kids that I’ve ever had the pleasure of getting to know. It’s truly a disservice to my child to try to put him in a box and leave him there. No matter how many things will continue to be difficult for him, there will always be other things that he will excel at.

This post originally appeared on The A-Word.

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A Letter to My Juvenile Arthritis

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Dear Arthritis,

You’ve taken so much from me. School, work, friends, hobbies. Every day I wake up in pain, and every night I go to sleep in pain (if I do get to sleep). You’re constantly trying so hard to make my body fail, to make my life so hard, to make me give up. But you know what? I won’t. I won’t lose this war. Maybe I’ll never win it either; maybe this fight will last my whole life, but I will never give up. There will be days when I feel like you’re beating me, but I will always come back. I will always continue fighting.

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This game is unfair. It’s like a soccer match without rules, breaks or an end. You’re the referee, the manager and the opposing team. It’s up to you when you’ll hit the ball, when you’ll try to score a goal. Sometimes you succeed; you’ve scored some goals during these years. But so has my team. The cortisone injections are like giving one of your players a dismissal; the pain killers are a free kick to me. Some of the other meds make your forwards play worse, some take players off the field. The happiness, hope, laughing and faith make the ground tilt a little so the ball rolls away from my goal. Together, doctors, nurses, physiotherapists, occupational therapists, researchers, friends, family and I do everything to help my body score goals.

In the last months, we haven’t done great; your team has been stronger than mine, but don’t get too happy about that. We will find a way to improve, and I will always continue fighting.

You don’t make it easy, and I might not win, but I will make the best of the time I’ve got.

I won’t give up.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Small Behavior Shift That Helped Me Bond with My Brother

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My twin brother, Daniel, was diagnosed with autism spectrum disorder at the age of 2 years old. Autism is a disorder that affects brain functioning and communication. There are many types of autism; some cases are extremely severe, and others are mild, or anywhere in between. Daniel’s autism was very severe when he was younger, but he’s progressed through age, therapy, and school. He can now talk, sing, dance… you name it!

What has always been incredibly fascinating to me is that Daniel actually starting tackling his milestones regularly as a baby (even before me in some aspects, such as walking). A little down the road, though, probably when he was about 2 years old, my parents started noticing that something was astray about Daniel because he began just staring ahead or facing a wall if anyone tried speaking to him.

He also stopped responding to his name, so my parents were starting to think that he was hearing-impaired. He started watching the television with the captions on and would draw any logos that he saw perfectly. My family didn’t really know what autism was back then. My father had just seen a movie called Rain Man about a week prior to Daniel’s diagnosis, which portrays the life of a man living with autism. When the doctors confirmed the autism diagnosis, my parents felt confused, devastated, and hopeless. My father then remarked, “So this is, like, that Rain Man movie I saw about a week ago, right?”

My mother, on the other hand, just wanted to get books, join support groups, and become educated all about autism so that she could find out how to help my brother. One doctor even told my mother that Daniel would never be able to speak or show affection towards others; he would not have the capabilities to form relationships or say “I love you” to his family. This hit my family like a ton of bricks and it hurt.

Having a sibling with special needs has definitely been so busy, difficult, wonderful, hectic, and fulfilling all at the same time. I must say, as children, he got on my very last nerve. Growing up, I always just kind of knew that he was different. He couldn’t talk until around age 7, so whenever I tried to speak to him or show him something that I thought was cool, he wouldn’t answer back. He didn’t like to share his toys or the remote and he was always throwing tantrums. When he did this in public, it embarrassed me very much.

At times, I felt like I missed out on certain things, like seeing friends. My parents didn’t really trust babysitters alone with Daniel because people didn’t understand his disability like I did as his twin sister or like our other brother did (we have another brother named Scott who is older). It was also difficult having friends over because they couldn’t comprehend why Daniel behaved the way he did.

As I got older and started to try and understand why he did the things he did (probably around middle school), our relationship got a lot easier to handle. From there, I realized as his speech got better that he only liked to talk about the things that he was interested in. I really wanted to have a strong relationship with him, so I went out of my way to observe him and find out what he liked so that I could talk about it with him.

Since then, we’ve gotten so much closer. I still use that tactic with him to this day. During that time of observing him so much, I also realized that I wanted to have a career in some type of work where I got to interact with children just like him. He helped me realize my destiny and path, and I couldn’t be more thankful for that.

Now that Daniel and I are both adults, we enjoy each other’s company a lot more than we did when we were children. In my eyes, he has grown into such a unique and well-rounded individual. I moved away for college to a town that is about seven hours away from home, and Daniel appears to have been largely affected by this change. When I visit home, he is glued to my side and when we’re not together, he sends me many text messages throughout the day.

His speech is now exceptional and he’s working very diligently with maintaining eye contact with others and holding a conversation. He currently has a job coach that is trying to help him find employment opportunities. He practices mock job interviews with my parents and the coach. I’m constantly worrying about his future, though. I want him to be able to be productive and obtain independence while still being safe out there.

Last year, I became his legal back-up guardian, in the event of something happening to our parents. This was a huge step in both of our lives. This responsibility is an honor and I would have claimed it in a heartbeat, of course (which I did). However, the thought of handling all of his legal matters and basically having his life in my hands is something that I never thought  I’d have to deal with. It’s definitely a whole different perspective now, as adults.

All of Daniel’s little quirks, habits, and interests that once bothered me so much now have me absolutely adoring him to the moon and back. He enjoys playing on the playground, watching cartoons, swimming, drawing, playing on his iPad, and going on car rides with me. As I previously mentioned, he also loves to send me text messages every single day to chat (since he still feels most comfortable typing behind a screen, rather than verbal communication a lot of the time). We communicate through FaceTime occasionally, though, and that is always fun for us.

If he’s mad at me, he doesn’t tell me; he draws a picture of me and what I did to make him angry! He is an incredible artist and uses his work to express himself. Our relationship is so strong these days and it’s only getting stronger. He’s extremely funny; we have inside jokes together and faces that we make to each other.

The most rewarding part is that he always tells me that he loves me now.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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Why Diabetes Has Me Singing This Classic Queen Song

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HEY! DIABETES! You blood-sucking, effort-zapping, pancreas wrecker,

There are no endearing terms for you, but I just wanted to get your attention. And, of course, you counter by attacking me with the lethargy brought on by low blood sugar. It interrupts my tirade against you, making me get off this chair to go eat some blood sugar-raising, weight-gain inducing carbohydrates, just so I can slam you down with my pen.

You think you are the mighty one, but I have to wonder who is stronger and tougher.

Me? For keeping you at bay for 38 years? Or you, For erratically showing up whenever and however you want?

Thanks for helping to upend my moods, my energy levels, and my self-control. You are no friend of mine. Incessantly, you hang out like a filthy slob in my life — wreaking havoc with my attempts at normalcy, shattering my attempts to reasonably control my health by jumping to attention when I eat too much or having an over-energetic exercise session.

Just when I think you’re not paying attention, you wake up from your comfortable position on the couch and rush to the forefront of my brain again. You’re always there, aren’t you?

Some days, I just plan to give up on you. Some days, I try to eat better and exercise and still feel like giving up on you. Some days, all seems well and I feel I might be able to live with you. Some days, I do not even want to know what you are up to while I am trying to eat better, exercise a little more and simply enjoy life as it comes. Every day, I’d like to forget you. But I can’t.

No matter what I do, it’s a dance of conflict. I throw you a well-prepared, carbohydrate-counted, portion-controlled meal and you pitch back at me high blood sugar. I shove some insulin at you and you bite back with a dose of fatigue and irritability.

This is not sissy fighting. It’s Rocky Balboa and Paul Blart (form the movie “Mall Cop”) all mixed into one. We take turns at being the heavy hitter or the survivor — both reaching for destiny, one with a powerful punch, the other with a desperately weak attack. Most often, it seems I am Paul Blart, searching out the hair-infested, dusty sucker salvaged from under a desk in a feeble attempt to treat hypoglycemia.

Some days, you beat me up mentally as I consider all the strategies needed to spar with you. Is my purse equipped with a blood sugar meter, mentos to treat low blood sugar, and insulin pens and needle tips to treat highs? Have I been drinking enough water? Am I out walking or running or lifting? Or, am I lethargic at my desk, wondering why I feel like cat crap?

My defense mechanisms rage as I sigh and wonder if you will pick your next fight with my kids, who share my genetics, and those of their ancestors. Then you win and I get sucker-punched into a stressed-out mode that drives up my blood sugar. I wish you would just leave me alone.

At the height of it all, though, you freakin’ unwelcome bedfellow, I think to myself —

Would I strive so hard to be healthy? Would I eat the way  I do (apples and peanut butter vs. the Reese’s Peanut Butter Cup Blizzard at Dairy Queen – extra large) or exercise as much (huff and puff) if I didn’t have to worry about you winning the fight?

Would I have a nice family of five kids if it weren’t for you hanging around to “help” me be healthy during pregnancy?

Would I even care as much about living as I do?

You see, I care a lot every day, and you are my excuse for doing so. Yes! It’s an edge-of-the-table arm wrestle with you all the time. I’m not giving up because I know neither will you.

Since I am a person and you’re just a thing, I’m claiming victory. Every day for the past 38 years, I’ve won. So, let me hold hands with all of the diseased of the world. Can you hear us? We’re singing Queen’s “We Are The Champions.”

“We Are The Champions. And we’ll keep on fighting to the end. We are the champions. We are the champions. No time for losers, because we are the champions… of the world.”

Yeah, you’re the loser, diabetes.

I’ve got this.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Our Cha-Cha Dance With Autism

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This is my happy place. This is what wakes me up in the morning; it’s what turns my frowns upside down and what makes me a better human. This is my family.

I love this photo. We had been wandering through an exhibition. Just before we made our exit, we were ushered into line for our turn in the photo booth. We were crammed in like tuna fish awaiting instruction… Was it the stark white interior, the singular menacing lens staring at us from the opposite side of the booth, or the high-pitched shrill of the camera’s operator? Whatever it was, when we found ourselves on the business end of a camera flash, our individual personalities shone through and were captured in an instant.

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The strange bald fellow on the left is yours truly, the stunner on the right is my wife, Leigh, and in the middle, well, that little guy is our son, Nicholas. Oh, and the one with the wings is Rip. He and Nicholas have been inseparable for around six months so at this point, he is family, too.

Pardon me if I sound conceited, but I love us! We are different colors, Leigh and Nic grow hair on their heads and I grow it from the bottom of my lip (sadly… more recently the tops of my ears too)… one of us even has a pair of wings! But besides the physical differences, we are all blessed with a good old fashioned dollop of quirkiness, making us a force to be reckoned with on any family outing. We are all a little different and strangely, these differences have kept us together.

Our son, Nicholas, was diagnosed on the autism spectrum a few months shy of seven years ago. When I think back on years past, man, we have come a long way. Our routine is silky smooth. Wait, it’s probably more “cha-cha-esque.” When we are on top of things, we masterfully take our two steps forward. When we suffer a setback, we take a step backward, but somewhat gracefully and in time with life’s music.

Obviously it wasn’t always like this… in the beginning, we flipped and flopped around. All three of us in a little over our heads, less cha-cha and more an awkward dance troupe found in the blooper reel of a ’90s reality dance show.

Autism can be a dance full of challenges, but we all have our challenges, don’t we? The point is, we became better with practice. We simply needed to find our groove, individually and as a family.

Unfortunately, life is not all dance competitions and photo booths. The very people that I am so devoted to can overwhelm and be overwhelmed. Trust me, I am a self-confessed helicopter parent. Sometimes I annoy myself… We have all found our escape when the going gets tough. Leigh disappears into her music; my kid finds comfort in sculpting dragons and planes from anything he can lay his hands on. I ride a unicycle.

Importantly, we have learned to give each other some breathing room. Enough room to be different, to be ourselves, and enough to three-point-turn back to each other.

My name is Shaun Murphy. I love my family.

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I Was Nervous They Picked My Brother as a Joke. I Didn’t Have to Be.

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Growing up, I was always “Chris’s older sister.”  It’s not common to be someone’s “older sister,” especially when you’re three years ahead of your brother in school.

I was the shy, timid kid who would hide behind her mom’s legs to avoid meeting new people. On the other hand, Chris is outgoing, loud, and friendly. He’s well-known on my college campus, even though it’s 3.5 hours away from home. I often joke that college is the first place that I could really be “just Lindsey,” rather than “Chris’s sister,” but he still managed to sneak his way in there, too.

One thing I’ve learned about Chris over the years is that he doesn’t care what other people think. Now, I’m not saying this is always a fantastic thing, but it is something that I deeply envy at times.

Last year, my family was surprised to learn that Chris (completely independently) auditioned and was accepted into the high school talent show. Chris loves to sing. I hear him sing when I’m driving him in the car, at 6 a.m. when he wakes up and starts blasting his music, and even in audio messages he texts to me when I’m at school.

Unfortunately, he (very much like myself) does not really have any sense of pitch or tone, though he has been working hard to become a better singer. So you can imagine how surprised my mom and I were when we found out that Chris sang a One Direction song as his audition for the school talent show and was accepted.

After surprise, the next thing I felt was pure, unadulterated fear. What if they only selected him so that everyone could make fun of him? What if this was all some big joke, and when he got up on the stage during the performance he would be booed? Why did they pick him to sing over other students?

While I was freaking out and pondering this, my mom was doing a similar thing. Her thoughts were probably a little more rational, but again this was Chris, the kid who is sometimes so off-pitch while singing that I have to turn off the radio while driving because it’s distracting (sorry, buddy!).

Despite our fears, Chris was cool, calm, collected and REALLY excited. He wouldn’t let us watch him practice (which just added to our own fears), and planned his whole outfit for the performance by himself. When the day finally came, and his act was up, I almost had to leave the auditorium because I was too nervous about what was about to happen. However, to my surprise and joy, the people loved Chris, even if they didn’t love his singing! He had people smiling, laughing, singing and clapping along with him, and got just as much applause (if not more) as all of the other acts.

Over the years, I’ve realized that I’ve been a little overprotective, but isn’t that what a big sister is supposed to do? While Chris is out on stage singing his heart out, not realizing or caring what other people think about him, I’m going to be in the background worrying about the reactions of others. I’m learning that the great majority of the time, the anxiety I feel about other people accepting Chris is unnecessary, but part of my role as “Chris’s older sister” is always going to be protecting him, and that is a job that I’m prepared for.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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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