When My Son’s Friends Asked What’s ‘Wrong’ With His Uncle With Autism

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Just over ten years ago we were visiting a family resort. My mom and I had gathered and corralled all four of my sons, along with my brother, to the resort swimming pool. With an ease we’ve mastered over time, Mom and I chatted while consistently counting heads, tossing playful banter at the boys and redirecting moods that could easily become meltdowns.

My brother Dar, who was about 21 at the time, loves water. He screams, he splashes, he sucks water in and spits it out, he jumps around and screams again.

My oldest son, who was about 10 years old at the time, loves making new friends. He invents creative games and gives random kids a role, he invites them to sleep over and builds blanket forts with two stories and a dance room, then makes more friends to play more roles.

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On this particular visit my brother was wildly happy. The acoustics at the indoor pool were his play thing, and he made strange sounds with wild abandon. While my oldest son swam nearby with new-found friends, Dar happily cleared out the hot tub.

Eventually, one of the kids my son was playing with asked with intense curiosity, pointing at my brother, “What’s wrong with him?”

My darling son look over at his uncle and shrugged. “Dunno,” was his bored response, “maybe he’s hungry.” And off they swam, question answered!

It’s not the questions we are asked about our autistic loved ones that matter most, but the way we answer them. 

My son’s disinterest in — and misunderstanding of — the “what’s wrong with him question” was a subtle message to the new friends. Subtle, but clear. Nothing was wrong with him. And nothing was so different about him that couldn’t be understood by the rest of us. Perhaps he’s hungry, perhaps he’s hurting, perhaps he has to use the restroom, perhaps he’s obnoxiously noisy and comfortable with his joy — all of these things are possibilities — people possibilities we can all relate to on some level.

Some of my son’s friends have tried to get to know his uncle more deeply, to help him with his possible pain and to join him in his joy. It’s been beautiful to watch.

And on that day his new friends were comfortable with the “hungry” answer, swam away and didn’t look back. They were busy playing and my brother was busy playing, too. It was beautiful to watch.

Dar swimming

Follow this journey on Autism Answers With Tsara Shelton.

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When Moms and Dads Feel Helpless at the Hospital

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Unless you’ve sung your child to sleep in an operating room, kissed his or her sweet cheek and been led away by a nurse, you have no idea the depth of the helplessness a momma can feel.

Unless you’ve lied awake all night begging God-Fate-Karma to let you keep your child, you don’t know what wanting something more than anything feels like.

Unless you’ve experienced having your baby back in your arms in recovery, you don’t know the sensation of feeling overwhelming gratefulness that lets your body breath once again.

Unless you’ve been there, you really don’t know how hard it can be.

And today for some reason, it was one of the hardest. My daughter Pip had a routine eye and ear surgery, which was obviously nowhere near as complicated as others, like her heart surgery. But today those feelings of helplessness took over.

This time I laid awake thinking how complete Pip makes our little family, how we wouldn’t be us without her.

This time holding her hand walking towards the surgery wing at 6 a.m. choked me up. She kept looking up at me so trusting, and it almost felt like I’ve never loved her more.

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This time Pip worked the waiting room, making people laugh, fall in love with her, caught under her spell before they themselves went under.

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This time Pip knew more than ever that something was going on and clung her little hands around my neck, not letting me put her down for even a second.

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This time when my twonk-of-a-husband forgot to pick up my “lucky surgery charm” (a.k.a. Snickers) and a kind, thoughtful hospital receptionist delivered some to me, I started to cry.

This time Pip forcefully and loudly made it clear she didn’t want her oxygen levels checked or an IV in. Her “no, no, no” over and over made me want to stop the whole thing.

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This time when the anesthesiologist went over the routine risks, I tuned her out and just took in the moment of having Pip’s cheek against mind as I rocked her.

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This time I didn’t care how loudly I sang “Row Row Row Your Boat” in the operating room as Pip drifted off to sleep while holding my hand.

This time I actually felt bad for the awkward male nurse who didn’t know what to do with the over-emotional-bawling-pregnant-with-her-third momma as he led me to the waiting room.

This time when two men who smelled of cigarettes and were talking cars in the waiting room bugged me, I simply got up and moved to the other room.

This time I only ate two snickers, one Toblerone and two donuts… I dare ya to seriously try to judge.

This time I profusely thanked the two doctors who needed to share operating time to perform on both Pip’s eyes and ears so she didn’t need two separate surgeries.

This time I smiled as the recovery nurses joked about us being frequent flyers.

This time I didn’t rush Pip but simply held her and breathed with her as she woke up.

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This time I spent the rest of the day pretty much glued to her.

This time, I know, won’t be the last, but she — we — survived together.

Follow this journey on the Happy Soul Project.

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The Challenges I Face With Relationships and Sex as a Woman With Dystonia

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I have cervical dystonia, which is a debilitating movement disorder that causes my shoulders, neck and other areas to spasm constantly. I also experience severe chronic pain and nine other disabilities. I’m 26 years old and currently dating my boyfriend of five-plus years, John. To make matters more difficult, John lives in Austin, Texas, and I live in Northern California.

Before meeting John, I was diagnosed with cervical dystonia and a whole host of other health issues. I never thought I’d find someone who would want to date me, let alone want to spend the rest of his life with me. I thought I would be single for the rest of my life. I thought I would be a cat lady and resolve to stop looking for love. I thought I was damaged goods. I thought no one would want me. Heck, I didn’t even like myself in the early days of my diagnosis. I was at war with my body; I didn’t have time for boys.

Fast forward to today. John and I are a happy couple. Although we have a long-distance relationship along with my disabilities, we manage to work through our challenges. A constant challenge is managing my disabilities and making sure I’m in a positive headspace. If I’m not, John gets me dressed and we go out. Then I feel better. It’s as if he intuitively knows what to do. We’ve also learned to be flexible when my symptoms arise.

By now, you might be thinking this guy John is extremely understanding and compassionate. I can verify that he indeed is. I can’t count how many times he’s carried me to the bath when I’m too weak, brought me food and done my laundry (even my delicates). I’m pretty spoiled. I quite enjoy it.

Now that you know more about my boyfriend and me, I think we can start to get more personal. Now I can talk to you about a biggie: sex. Yes, I can confirm we have sex. And I can confirm we both enjoy it very much, but there’s a big secret we carry around about our sex life. You see, my disabilities affect every aspect of my life — even my sex life. Now, how can I put this without sounding inappropriate? Well, we’ll be enjoying ourselves and then my spasms and pain kick into overdrive, and we have to stop. You see, that’s why John is literally the best boyfriend a girl could ask for. He never blames me when we have to stop. He always comforts me because I get frustrated and usually start to cry. I mean, can’t a girl just get laid? Some days, I get my medication timing just right and, well, you know the rest. 

I don’t think there’s enough of a conversation about people with disabilities and sex. My health insurance only referred me to a specialist who treats cancer patients to have a better sex life, so I didn’t qualify. I believe it’s something our healthcare system is not properly addressing. Since some experts say sex is an important part of happiness, I think we should start a conversation.

If you are a person with disabilities, how are you able to achieve a fulfilling sex life? If you are a partner without disabilities, what things can you do to help your disabled partner? Where are the experts who can help people like me have more sex, and why aren’t they available to me through my healthcare company?

Follow this journey on Chronically Whitney.

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A Not-So-Typical Letter to My Daughter’s Birth Mother

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You may never know how truly grateful we are for your decision to choose adoption for your unborn baby. There were other choices you could have made, but you chose life and another family to raise your precious child. Our story is not the typical “thank you” for choosing life and for choosing our family.

We thank you because you gave our family a blessing in our lowest, most desperate moment.

After our daughter, Abby, was born, we were unable to have more biological children. We began looking into adoption and decided that it was the right choice for our family. We felt God was calling us to adopt and share our love with other children. Abby often asked about having a little sister or a little brother and we wanted that so much for her, too. We completed the required paperwork, social work visits, profile books of our family and just waited on the call. We felt at ease with the wait, and we didn’t feel urgency or disheartened when we heard about other families being chosen. We believed God was at work in our lives, building our faith and preparing us for our future addition.

As we waited over the years, we lived our lives and focused our love and attention on Abby. She was learning to dance, cheer, swim and was starting school. She was a typical child until that first year of school in kindergarten. We started to notice a change in her cognition, and she was beginning to have difficulty learning. Throughout kindergarten, we worked with her diligently and she was able to learn, but on a slower pace than her peers. At 6 years old, we began vigorously searching for the cause of her learning disability.

At the age of 8, we finally had an answer. I remember the day so well. It was a Tuesday and I received the call from Abby’s physician while I was at work. The test came back positive. We knew she was being tested for Sanfilippo syndrome, but we still held out hope that she didn’t have the disorder. I hung up the phone and just cried at my desk. It was any parent’s worst fear. She was diagnosed with a terminal illness. There was no cure, not even a treatment. Her brain was slowing fading away. She was slowly losing skills and would suffer a progressive neurological decline over time, losing her ability to talk, walk and feed herself. Her life expectancy would most likely be in the teenage years.

The following Monday, within a seven-day period, you provided a ray of light and hope into our lives. Our social worker called my husband and me. His exact words were, “We have a baby.” I can’t even truly describe how I felt at that moment.

My heart felt like it began to beat again, my spirit began to lift, my head started to clear and I felt a sense of joy rising inside of me.

I immediately thought of God and how I believed he was working in this situation. I felt he knew when our lives would need lifting up. We waited all of those years and we never questioned “why.” I believed he was teaching us to trust, have faith and that it will happen in “God’s timing.” Within one week, we found out our only biological daughter was dying and a new life was growing and would be joining our family.

You have brought our family more happiness and love that I can ever express. Abby was thrilled to have a little sister. It was a little challenging at first to explain adoption to her because she is developmentally on a 5- or 6-year-old level, but she accepted our explanation and went on loving her little sister. The bond that Abby and Kate share is unbelievably strong. Although Kate is 2 years old, we’ve felt she already knows Abby is different, and she will need to take care of her one day.

We think of you and pray for you often. We hope you are at peace and know how loved Kate is by us and our entire family. She has brought Abby so much joy, and for that we are eternally grateful. We love you and thank you more than you may ever know.

Follow this journey on Strengthening the Soul.

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When a Girl Asked If I Ever Wished My Brother Were ‘Normal’

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The mother of a child with Down syndrome once told my parents, “People take their cue from you. Treat him different and others will, too.”

At age 5, I was too young to understand the enormity of what my parents were dealing with when they brought my baby brother home from the hospital in the spring of 1986. My mom remembers me telling her that my heart hurt. I am certain I was taking my cue from others. I probably saw the pain in their eyes or the worry on their faces. I don’t remember saying it and certainly don’t remember feeling that way when the sibling I’d been praying for finally arrived!

My parents often talk about the way I was able to get him to do things that no one — not his physical therapist, not his speech therapist, not his teachers — could get him to do. A part of me thinks he knew not to mess with a bossy older sister. But the truth is, he’s been a fighter since he was born, and I’ve been determined to see him succeed so we made a good pair.

We’d practice tummy time in front of the Royals game. I’d sit him up on the driveway as I rode my bike in circles around him. I encouraged his first steps and rushed to pick him up when he fell.

We grew up in a small town. People were kind. You got to know your neighbors. He was always just “one of the kids.” If anyone ever saw my brother as different, they didn’t mention it.

Things changed when we moved. A girl in my new class asked, “Do you ever wish your brother were normal?”

Normal? I had never even considered that he wasn’t normal. I knew he had Down syndrome and I knew that meant he had a different set of challenges than most of us. But normal? Such a tough question for a 9-year old to wrestle with.

So as it was, in a fourth grade classroom at John Glenn Elementary, I learned that people would take their cue from me. Others would treat him the way they saw me treat him. So I always supported him, always cheered for him, always helped him. When my friends and peers saw that, they followed suit. And my closest friends…well, they never seemed to notice that he was anything but one of us.

We were fortunate that our community and high school provided us many opportunities to get involved. We were both very active in student council. We were both involved in sports. We both helped decorate our class floats at homecoming. We both went to prom. And we both made a few stupid “teenage” mistakes along the way.

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You certainly know the essay called “Welcome to Holland” by Emily Perl Kingsley where the excitement for a vacation to Italy turns to disappointment when the plane lands in Holland. The metaphor is that the trip to Italy is a typical child-raising experience, while the trip to Holland is the experience of raising a child with special needs. In the end, you see that the “trip” is really worth it.

In college, I spent a semester traveling throughout Europe. So I’ve been to Italy. And I’ve been to Holland. And I can tell you that they are stunning in their own way. The landscapes. The architecture. The people. The food. They are different, but as they often say in the Down syndrome community, they are more like than different.

In June 2011, I left the U.S., passport in hand, for a 14-hour flight to Europe. This time I stepped foot off the plane to a country not mentioned in Kingsley’s essay. I landed in Greece. Athens, to be exact.

Home of Socrates and Plato. Home to the Parthenon. Home to the first recorded Olympic Games. And that summer, home to 7,000 athletes, 2,500 coaches, 3,000 officials, 25,000 volunteers and an estimated 40,000 families — including ours — as we watched my brother, a member of Team USA, compete in the Special Olympics Summer World Games.

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If you’ve ever watched the Olympic Games on TV, you know the feeling of jumping up and down in your living room trying to help push a total stranger like Michael Phelps down the pool past his competition using your hands or lots of loud yelling. I can say that these Games were no different for me.

The thrill of seeing my brother’s training culminate on the world stage is indescribable. The camaraderie of the athletes and of the families was unlike anything I’d ever experienced. Though there may have been a language barrier when 185 countries descend on a foreign land — the one language that knows no barrier is a smile and there were plenty of those.

My brother was thrilled to attend the World Games. He worked so hard to get there. He wanted to make new friends, have a good time swimming and maybe set a few personal records. A medal would be nice, but we knew the competition would be intense so we concentrated on the incredible opportunity and focused less on possible outcomes.

I kept in touch with friends back home through email and Facebook. After he’d won two bronze medals and a silver medal, one of my friends sent a message that read, “I just want him to win a gold medal. It just doesn’t feel complete without the gold.” She continued to write Facebook posts about how she hoped he would win the gold. I’d reply with a speech similar to that of an Oscar-nominated actor: “We’ll be happy no matter what — it’s such an honor just to be here.”

I suddenly felt this extreme pressure — people back home were expecting so much from him. Didn’t they understand that we were already proud of him? That we were proud of the bronze and silver medals? And that’s when I realized it — others were dreaming and they were dreaming big for him. If they could, why couldn’t I?

That afternoon, I went to the pool determined to see my brother come home with a gold medal. Just minutes after I allowed myself to dream big, I watched him walk on to the highest podium to collect his gold medal.

My mom once said, “Give yourself permission to dream. And when you do — dream big.” Whether we’re dreaming for children with special needs or children without, dreaming about future opportunities that don’t yet exist or dreaming about a world where everyone is accepted as an equal, dream big.

Growing up, I always wanted to set an example for my brother. I wanted to pave the way so that when he followed five years later, things would be easier for him. Teachers would accept him. His classmates would want him on their team. And doors would magically open because I’d paved the way. What I didn’t know was that my brother would be the one setting the example for me.

Because of him, and the entire Down syndrome community, I make sure that way I treat him is the way I want others to treat him. Because of him, I’m an advocate. Because of him, I don’t give up. Because of him, I have one more stamp in my passport book. And because of him, I dream big.

So to the girl in Mrs. Thomas’s fourth grade, you should know that my brother has held steady employment for years. He’s in a committed relationship with a darling woman. He’s traveled around the world and has won countless medals on the golf course and in the pool. He has volunteered hundreds of hours helping train future Special Olympians. He’s had more speaking gigs than I can count. He’s a wonderful uncle who loves my kids something fierce. He has a witty sense of humor and has never met a movie or a meal that he didn’t like.

I don’t even know what “normal” is, but I’m so glad he’s not.

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When a Teacher Invited My Daughter With Disabilities Into His Classroom

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Sometimes friends would ask, “Don’t you worry about sending your child with special needs to public school? After all, kids can be cruel.” While the media focuses on bullying in schools and cyberspace, the other side of the story we rarely hear is how kids can be kind, especially when those with and without disabilities grow up together.

The fact is, I believe inclusion has the power to turn a bully into a buddy.

One of our elementary school teachers had a brilliant idea to invite my Noni, my daughter with multiple disabilities into his class so his students could read to her. It was a brave experiment since the class consisted of six boys with severe behavior disorders.

My daughter, likely the most vulnerable student in the school, would be paired with the most troubled.

Entering their classroom, Noni was all smiles and sweet as could be to each boy. Unencumbered by stereotypes, she presumed the best in them, not the worst.

They didn’t disappoint. The boys, famous for violent outbursts, melted. Kindness and gentleness took over as they sat together reading storybooks and chatting.

She loved every minute. So did they — not just because she kindled the good in them and doled out generous helpings of respect, but because she needed and appreciated their help. She met their fundamental human need to be needed.

Fast forward to middle school years, as Noni and I are exiting our local Kmart, I hear a young voice say, “Hey, Noni.” I turn to see a band of boys hanging out on skateboards.

My impulse is to pull my daughter close. “Hey, Matt,” she answers excitedly and wriggles free from my grasp to wave.

“Who’s that?” I ask her, as we make our way through the parking lot.

“That’s my friend, Matt.”

“How do you know him?”

“From school.”

“Is he a nice boy?”

“Oh, yeah!” she says, with a fist pump.

It hit me. This mom needs more practice to get better at not judging a book by its cover. Luckily, I’ve got the perfect person to teach me.

Follow this journey on Baloney Macaroni.

Lead photo source: Thinkstock Images

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