The Moment in the Produce Aisle That Proved the Autism Specialists Wrong

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I don’t want to eat this apple.

As I rinse the Gala apple I am disappointed. It’s surface is a dull red interrupted by an uneven patch of yellow. It’s lopsided and marred by bruises. It simply can’t compare to the shiny green luster of a Granny Smith.

I twist out the stem and bring the small, unwanted apple to my nose. I close my eyes and inhale.

I’m trying to trick my brain into appreciating this piece of fruit. Instead, the unremarkable scent has me imagining a bite of the absent Granny Smith. My teeth would break the skin, releasing tart juices onto my tongue. The crunch of each  subsequent bite would echo in my head. I would nibble off crispy white morsels until I reached the core. I would feel righteous eating such an apple, knowing how much healthier it is for me than a processed snack food.

Instead, I am feeling like a martyr. Sure, Gala apples were on sale at the grocery store, so I saved a few cents opting for this kind over the Granny Smith.  The two varieties were displayed side by side in the produce section. I was reaching for the luscious green apples when I was forced to buy the boring Galas.

It’s my son’s fault. You know, my autistic son who supposedly cannot pretend. “Lack of symbolic play skills” was one of the criteria for his diagnosis. It was one of the many things the specialists told us my son couldn’t do.

He was my shopping companion last Wednesday. He stood beside me as I scanned the Granny Smiths looking for apples without blemishes, the ones with the loveliest green curves.

I was reaching for the perfect specimen when Philip grabbed a Gala apple from the adjacent bin. He put it to his mouth and pretended to take a bite.

I had to buy this apple since Philip’s lips touched it. I put it in a bag. While my hands were occupied with this task, he grabbed a second apple and, complete with chomping sound effects, pretended to eat it. I was forced to purchase that one, too.

That’s why I’m washing an apple I never wanted. That’s why I’m taking a bite.

And it’s the sweetest tasting fruit I have ever eaten.

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A version of this post originally appeared That Cynking Feeling

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Why I’m Talking About Medical Marijuana, Even If It Makes You Uncomfortable

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Medical Marijuana. I’m just going to throw the words out there now, because for some reason they cause discomfort. And I think “uncomfortable” is a good place to start.

I watched the documentary “Growing Hope” on NBC, which is about the fight for medical marijuana for epileptic kids and now I’m having a hard time staying quiet about the topic.

It’s fascinating to me that a treatment that has shown such marked potential gets so much push back. When getting rid of seizures is notoriously difficult, and in some cases considered impossible, this drug with so much potential is being squashed by legislation.

I’m not here to debate its efficacy, or defend its long-term use, or say that I know for a fact it will work. I’m here to complain that I can’t speak to those things because we’ve yet to have the chance to find out.

I can tell you that the seizure medication Phenobarbital knocked my boys out so badly that they lost the ability to breathe or eat on their own. We spent weeks in the NICU trying to figure out what cocktail of drugs would allow them to wake up enough to go home. I can tell you that while ACTH (Adrenocorticotropic Hormone), another seizure treatment, worked nicely initially, coming off of it led to an immunity crash that my son Landon almost didn’t survive.

I can tell you tomorrow we’re going to a vision appointment because being on Sabril requires routine checkups to ensure there hasn’t been permanent vision loss. I can tell you that despite being on four seizure treatments at the time, Landon had a seizure in the night that almost led to his death just a few short weeks ago.

I could list all of the potential side effects we’ve exposed the boys to in the name of seizure treatment, but you’ll quit reading long before I reach the end. Yet, for some reason, when the word “marijuana” is involved, people get uncomfortable.

Ironically, many seizure treatment strains are made from plants that are so low in THC (tetrahydrocannabinol), which is the chemical that produces many of marijuana’s psychological effects, that they are considered hemp and don’t even produce the “high” that is causing a lot of the social stigma. But honestly, considering the extreme and known side effects of currently approved and socially accepted drugs, I find that irrelevant. We’ve known for years there is potential, yet it has been socially downgraded and politically ignored for far too long.

I’ve met a lot of wonderful people in our journey with the boys. Everyone’s story is different. But when it comes to seizures, there is a common thread — despite countless drugs, steroids, diets and surgeries, very few find success. In the end, the seizures almost always win the war. And while there is no guarantee medical marijuana, hemp plants and CBD oils will change that in every circumstance, I can’t for the life of me figure out why someone in a suit who is unaffected by it says the medical community shouldn’t give it a fair shot.

For now, I just ask that when you hear about hemp and marijuana plants, or plant-based CBD oils being used as seizure treatments, you stop picturing Jay and Silent Bob, and start picturing kids like my sons, Landon and Nolan.

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And somewhere out there, if you’re someone in power who could help advocate for the research and legislation needed and you’re still sleeping on it, understand this: I go to bed every night praying this isn’t the night a seizure quietly wins.

So while you’re “sleeping on it,” moms like me aren’t getting any rest.

A version of this post originally appeared on Mama Laughs.

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Why I Let My Daughter Struggle to Stand

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IMG_20130422_143230_361 My daughter has cerebral palsy that is immediately obvious with her stiff gait and leg braces, but I’m the mom at the playground sitting on the bench letting her play without me.

If she trips on the mulch, I don’t rush over to help; I let her stand back up. If she wants to climb up the ladder, I let her do it even if I’m sitting there holding my breath the entire time. I’ve seen every variety of well meaning people gasp as my daughter trips, then cast an annoyed glance in my direction before rushing over to grab her and stand her back upright. I’ve had to ask many people to please not help her. I’ve said over and over again: “She’s fine. Let her do it herself.”

I’m sure to the outsider I have at times appeared uncaring, however the opposite is true. My daughter never had the chance to try to walk during the first four years of her life. She spent those years in an orphanage where no one believed she could learn, so she never tried. At the age of 5, with AFOs and weekly therapy, she finally took her first independent steps. Like a toddler though, she fell often. The most important part of falling is learning how to get back up, so we spent hours teaching her how. Standing up is a hard skill to learn at 5 and 6 years old, but it’s easier to learn at 6 than 10. Time was not on her side.

So when she fell, we would fight the urge to run over and stand her back up. Instead we would encourage her to get her legs back under her body and do it herself. At first, even she was resistant to the idea of doing it herself. For years no one had ever expected her to walk or stand. It was hard!

I knew she could do it, so I insisted she try. Every. Single. Time. It would take her a full minute to get her legs properly positioned to stand up. It wasn’t that she couldn’t; she just needed the time to figure it all out. Motor planning that comes naturally to an infant doesn’t come so easily to an older, bigger child. I would sometimes assist her by holding her waist with my fingers, but I wouldn’t pick her up. The glares I got told me what some people thought of my parenting method. Sometimes I didn’t even want to go out in public with my daughter because the first time she would fall over, someone would see her taking more than two seconds to get up and rush in to help. I’d be forced to ask them to stop in what always felt like a horribly awkward moment.

But you know what? Today my daughter can stand back up almost immediately. She’s learned to tell people, “Please don’t touch me, I can do it myself.” And she does.

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She also opens doors, goes up and down stairs, gets dressed, takes a shower, puts her shoes on (and ties them!) and buckles her seatbelt — all because I didn’t give her a free pass when those things were still difficult. She’s learned that just because something is hard, doesn’t mean she cannot learn to do it. She’s learned that while having a disability may mean some things are harder, it doesn’t mean things are impossible.

Life isn’t always accommodating or fair. Sometimes there’s no easy way to accomplish things.

These days I let my daughter struggle to get her own cup out of the cabinet to get a drink. I let her struggle to load the dishwasher. I let her struggle to haul her laundry hamper downstairs. I let her struggle to do chores with her siblings. These are life skills that are hard for her now but necessary if she really wants to go to college like she talks about.

Someday she may want to struggle to learn to drive a car, or be a doctor, or cook a meal for her future spouse. It’s my job to make sure she understands she can.

The gift of learning to be independent is too precious to take away — even if it’s harder for some to open the package.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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 “Share Your Story” page for more about our submission guidelines.

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The One Request I Ask of Parents of Typical Kids This Summer

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Dear parents of typically developing kids,

It’s been a busy summer! I see your Facebook posts about dance recitals and costumes, Little League championships and trophies and graduation parties with swimming pools. I see smiles covered with ice cream and big duffel bags packed and ready to go for overnight camp.

I want to live vicariously through your fun experiences, but sometimes it’s just too hard. Families with children with special needs like mine don’t always get to enjoy the same luxuries. “Luxury?” I hear you say. “That duffel bag will be coming home with 10 days of stinky, sweaty and dirty clothes for me to wash!” or “I had to sit through 12 dance numbers just to get to my kid’s two-minute performance!” My response? Yes, dirty clothes would be a luxury for me.

This isn’t a sob story or pity party post. Rather, I’m asking you to consider ways you might be able to include us in some of these activities. Please know I’m not blaming you for not having a child with a disability and maybe not noticing kids who are a little different weren’t always included in these events.

The next time you’re at a recital, Little League game or camp orientation, please look around to see if any children with special needs and disabilities are being included. Ask your camp counselors if there are campers with special needs involved in activities or are even allowed admission to the camp at all.

They’re all so used to hearing from special needs parents like me who want our kids to have the opportunity to be included. But maybe it would make an even bigger impact if you brought it up, too. Sometimes, just raising awareness will help bring about change for programming policies that could open the door for so many families like mine. Plus, there’s no denying that inclusion benefits all people, not just those with disabilities.

And that graduation party? Please look around to see if any students with disabilities were invited and included. I’m not bringing this up to make you feel bad. I just want to let you know what may seem like a small gesture of inclusion to you, means the world to a family like mine. Raising a kiddo with any special need can be very isolating. If we’re included, we feel accepted, appreciated and even hopeful for our child’s future. Yes, you can do all of that for us by extending an invitation or speaking to the dance instructor, coach or camp director about including all participants.

Love,

Dani, a mama bird to a sweet little bird who happens to have autism.

A version of this post originally appeared on Birdhouse for Autism.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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 “Share Your Story” page for more about our submission guidelines.

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Please Keep Your Advice About My Son With Autism to Yourself

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My son, Charlie, has a sweet, gap-toothed smile and a twinkle in his chocolate-brown eyes that will make you fall in love with him instantly. He also has very limited language skills and a tendency to panic around sudden, loud noises. (Who doesn’t, right?) On warm afternoons, he’s inclined to strip naked in the living room if he thinks there’s even the slightest chance you’ll take him swimming, making things a little awkward when his two older brothers have friends visiting.

Now 8, Charlie was placed on the autism spectrum when he was just under 3. Thanks to a lot of hard work at home and finding the right school with wonderful and dedicated teachers, we’ve been fortunate to watch him make slow but steady progress.

I would never complain about my son, mostly because I think he’s amazing. And yet, despite this, I have friends with some professional experience in special needs fields, but limited knowledge of my son, who seem to want to offer me unsolicited advice and tell me all the things I should be doing.

One evening, I met an old friend for coffee. She’s a physical therapist who works in school districts but hasn’t seen Charlie in at least five years. Still, she wasted no time in grilling me on how he was doing.

“He’s great,” I said. “We’re really lucky he is where he is. He’s made tremendous progress.”

She stared back, seemingly unsatisfied.

“He can read short books now,” I offered.

“Yeah, but does he understand what he’s reading?” she asked, grimacing.

“We’re working on it,” I said, my grip tightening on my coffee cup.

“I know a mother with two kids on the spectrum, and she brings stress balls for them to carry while she grocery shops. It really helps. Have you thought of doing that?” she asked.

“Um, I don’t really have any problem taking Charlie to the supermarket. In fact, he loves picking things off the shelves and is a huge help unloading the cart and putting items on the conveyor belt.”

She seemed deflated but pressed on, determined to offer some life-changing nugget.

“Did you know that some of those indoor trampoline places have special times just for kids with disabilities?” she continued.

“Oh, we’ve taken him to those during regular hours and he loved it. That’s not a problem for us.”

I had to fight the urge to say, “And he’s learned to ride a bike without training wheels, and he’s trying lots of new foods and …”

Later, I thought, why do I need to justify how I care for Charlie to you? But this isn’t the first time I’ve gotten advice about my son, and I’m sure it won’t be the last.

I’m a mother who travels with stacks of flashcards of sight words in her purse, so I’m on this. I don’t allow three minutes to pass without us interacting — even if it’s just to reinforce social questions or give Charlie the tickles and kisses he loves and craves.

I choose to live each day celebrating the things my son can do. But please don’t ever mistake that for denial or ignorance; I’m painfully aware of his limitations. My heart breaks when children ask him to join a game of tag in the playground, and he can’t quite understand what they’re saying, let alone participate. But I rejoice in the fact they asked him at all. To his peers, at least for the first few moments, he was just like them. Several years ago, that would never have seemed possible.

The word autism can be big and terrifying for some people, and I know on some level my friends think they’re helping. They’re trying to impart some wisdom they’ve picked up along the way. But just as I wouldn’t presume to give unsolicited suggestions on how to guide their typically developing children, I’d rather they refrain from offering me advice on how to help my son, especially when I haven’t asked for it.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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 “Share Your Story” page for more about our submission guidelines.

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When My Daughter With Special Needs Was Teased by Her Peers

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Kate has taught our family many lessons over the years. Just last weekend, I learned another one about forgiveness.

Kate attends a wonderful program called Our Place. Their mission is to support teens and adults with developmental disabilities so they can live meaningful, productive and socially connected lives in their home community.

You’ll notice in Our Place’s mission statement the attendees are referred to as adults and teens first. First and foremost, they’re people. Even if Kate can’t really read or write, drive a car and pick out the seasonally appropriate clothing, she’s a person with emotions just like you and me.

I wasn’t there on Saturday night, but the staff pulled me aside when I picked Kate up and told me Dick had been really mean to Kate. Jane joined in, too. They were so mean to Kate that she cried — really hard. The staff handled the situation, and by the time we got there, Dick and Jane said hi to me, while Kate came bounding down the stairs full of stories about karaoke night and singing “High School Musical” songs. Dick asked when he and Kate could go see a movie.

I didn’t bring it up the incident to Kate later that night because, to be honest, my heart broke for her for two reasons: 1) I wasn’t there to protect her. I’m her mom and that’s my job. 2) I had to wrap my head around the fact the kids who are teased all their lives for being different also tease and make fun of people, too. Surprised? You would think they knew firsthand what it feels like and wouldn’t want to hurt anyone else. But then you have to remember, first and foremost, they’re people, too.

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In less than two hours, Kate’s heart had evidently been broken, mended and the situation was forgiven and forgotten. How many of us can say that? How many of us aren’t speaking to a family member about something that hurt our feelings? How many of us have hurt someone else and didn’t ask for forgiveness? Kate, and others like her, experience life the same way we do, but their perspectives are different. I often wish mine was more like hers.

I did ask her this morning if she wanted to talk about what happened last night that made her cry. Her response: “No, we apologized. What’s for breakfast?” Just like that, it was over for her. But I’ll be thinking about it for a long time and worry about her. But that’s my job. Her job is to share the joy, and she’s doing it very well.

A version of this post originally appeared on All I Ever Wanted to Be Was Normal.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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 “Share Your Story” page for more about our submission guidelines.

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