What the 'Looky-Loo Stink Facers' In the Grocery Store Are Missing About My Son

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There we were, walking trough our local grocery store, picking up our usual household necessities. Well, I was walking — my boy was riding in the cart. The trip was going fairly smoothly, and a then a lady asked, “Is he deaf?”

I wonder what clued her in that my boy was “different.” Could it have been that he’s 7 years old, weighs 90 pounds, and is still riding in the grocery cart? Or maybe it’s that he was squealing at a level that made the wine bottles shake? Perhaps it was all that finger-flicking and hand flapping that gave it away. (Just between you and I, I think she may be the next big mystery solver! Scoot over Sherlock, this lady’s gunning for your job!).

My response was, “No, he’s autistic.” She just smiled, nodded her head, and walked away. A few years ago, a comment like that one, would have either offended me or sent me to the car in tears because it meant that people could obviously tell that something was “wrong” with my boy.

Now, a question like that doesn’t really bother me. I just look at it as natural curiosity. I’ll take a genuine curious question any day over a judgmental, ignorant comment, or worse, the “stink-face stare.” You know, the look people give without having to say a word? The “That kid needs a spanking,” or  “Kids nowadays, no discipline I tell Ya” look.

Those are the worst. Well, there was none of that, until checkout time. Now normally, this is when we’re almost home free.

Not today.

When my boy is good, he gets to pick out one thing. Today, that one thing was fruit flavored Tic-Tacs. “Deal!” I said. They’re cheap, low-cal, and best of all, don’t make any friggin noise. Everyone’s a winner!

And then — He dropped one. One. As in the singular. One friggin’ Tic-Tac (Insert dramatic screeching car crash sound here. Throw in a bomb exploding while you’re at it.).

He immediately started freaking out.

I looked as quickly as I could to try and find that Tic-Tac, and no luck. And to all the “perfect” little mommies that are reading this wondering “Gasp! Was she going to actually let him eat that tic-tac?” To avoid a code red meltdown? Damn right I would.

Autism parents are always in survival mode. And in the case of a very quickly progressing meltdown, we will do just about anything we can to avoid it escalating to a full on code red. Even if that means letting him eat a dirty Tic-Tac. Or at least this Autism mom would.

Any of you that disagree with this, can feel free to call me at 1-800-You-Do-You, and If that number doesn’t work, try 1-800-Ima-Do-Me!

The lone Tic-Tac was never found. My boy went into a full on meltdown.

He screamed and flailed his arms about from the time we paid to the time we walked through the front of the store, out through the doors, into the car and the rest of the way home.

mother and her son

All while, yes, the “looky-loo stink eyes” were being given. Sigh.

By the time we got home, he had managed to calm himself down. I was an exhausted wreck that now had an eye-twitch (Just kidding).

You know, I wish I could tell any “newbies” (newly diagnosed parents of ASD children) that it gets easier, but the truth is, it doesn’t. As time progresses, you just learn to deal with things better. You’ll learn to bounce back quicker from the rough spots. You’ll learn that everyday will bring it’s own new challenges. You’ll learn what works best for you, what works best for your child, and that all you can do is the best you can do.

And most importantly, you’ll learn that none of us have it all figured out. To put it simply, Autism is O.T.J.T (on-the-job-training)!

You’ll learn that most people really are genuinely curious and just don’t know what or how to ask about your child. And as for the others, the “looky-loo, stink-facers?” You know what, they saw one moment, one struggle, one meltdown, one glimpse into a life they know nothing about.

They don’t see the amount of work, effort and love that get’s poured into your kid.

They didn’t see the first time he finally looked at you when you said his name.

They didn’t see what a big deal it was the first time he held a spoon correctly even though he’s 7 years old.

They didn’t see the first time he initiated “play” with a friend.

They didn’t see the first time he said, “I love you” using his iPad.

But you know what? They don’t deserve to! Those special moments are magical. They may have seen a brief moment of the madness, but they do not deserve to see the magic.

The magic, well that’s reserved for you, and at the end of the day, the magic is worth the madness.

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The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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 Great Divide Within the Autism Community

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My daughter was diagnosed in August, right before she turned 2 years old. I did everything on the pamphlet that the neurologist gave me when he said, “Your daughter has autism spectrum disorder.”

I told my family she was already receiving Early Intervention, but we were now going to be getting much more, including intensive in-home therapies every day. I was praised and commended for being her advocate and getting her diagnosed early.

The pamphlet mentioned finding a support group; I looked and found none. I turned to the internet to find moms and dads like me. I knew I wasn’t the only one needing to talk it out and talk with people who get it, people who are living it, just like my family.

What I didn’t know was that there’s a great divide in the autism community. I didn’t realize that not only would I advocate for my daughter, but Id also have to explain how and why I advocate for her the way I do.

I see this great divide every day. I try to steer clear of it because I have a job to do. I am a mom, caretaker, wife, advocate, and a person living with autism. No, I don’t have autism… but my daughter does. I change her, not knowing how long she will be in diapers. I keep her safe by bolting furniture and keeping all doors and windows locked. My kitchen chairs have been on top of my kitchen table for almost a year. I take her to every appointment, and there are many. I sit down on the floor every day during her therapies so I can take it all in and learn it so I can teach her when her therapists aren’t here. Her needs come before mine and I gladly make it that way. I have a job to do!

I am an autism mom. Autism came in to our house when Zoey was 14 months old, and it didn’t just change Zoey’s life, it changed all of us. I’ve become her voice, caretaker, teacher and advocate. I’m living it with her, her sister is living it with her and her daddy is living it with her. It affects us all. We’re her support system.

So it baffles me when I see heated discussions in the autism community:

“You can’t call yourself an autism mom.”

“You don’t get it because your child is high-functioning”

“You don’t get it because your child isn’t severe”

“Don’t call me an Aspie.”

“I refer to myself as an Aspie.”

“No labels.”

“Accept it, he or she is autistic.”

I’ve watched the fighting and I’ve seen people get mean and nasty. It’s sad.

A child with autism has a different journey and path than that of an adult with autism. Each person with autism is on his or her own unique and beautiful path. Who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself?

Don’t we all want the same thing in the end?

Awareness. Acceptance. Love.

We need to accept that “if you’ve met one person with autism, you’ve met one person with autism.”

We need to accept each path and journey will be different, and the great divide isn’t helping. Everyone has their own story and how they choose to tell it. If we as a community can not accept one another, how can we ask the same from others?

Follow this journey on Melissa’s Facebook page.

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12 Parenting 'No No's' I Allow Because My Son Has Autism

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My son has severe nonverbal autism. Because of that, my parenting style is probably totally different than if I had a neurotypical kid.

It got me thinking about all the things I allow my son to do that most parents usually tell their kids not to do. Some of these I encourage my son to do because it’s a typical thing kids do. Some of these I let my son do because I pick and choose my battles. And some I let him do because of the limitations from his disability.

So here they are, in no particular order.

1. Eating with his hands. 

This is a combination of picking and choosing my battles and adjusting my expectations due to Kyle’s fine motor issues and major eating issues. When your kid doesn’t eat very well to begin with, as long as he’s getting it down I don’t care if he uses his hands. This might change in the future, but for now this is a battle not worth fighting.

2. Running in the hallway. 

I always see parents or teachers tell their kids to stop running in the hallway and I think, “Why?” But seriously, the school where Kyle gets his music therapy on Saturdays has a big wide, long hallway to his classroom that’s perfect for a fast run. So while all the other parents are telling their kids to wait, I’m dragging Kyle by the hand saying, “Let’s run, let’s run!”

I’d just love to see him run somewhere with a sense of purpose instead of his usual meandering around. Plus I like to run. I run marathons (very slowly) and would love to somehow get Kyle involved in the running community.

3. Splashing in the tub or pool.

It’s a right of passage for kids to splash around in the tub. So what if water gets all over the floor? That’s what towels are for. And the pool?! That’s what pools were meant for…  Splashing! Why are all the nuerotypical parents discouraging splashing? What am I missing? Did I miss the memo? I’m the one dad in the pool who’s splashing water in my son’s face. I must look like a big jerk.

4. Eating breakfast for dinner. Or popcorn for breakfast. Or spoonfuls of jelly for lunch. 

Again, my kid has major eating issues and he lost weight a year back, so when he’s hungry he gets what he wants and that’s it. Other ASD parents know what I’m talking about. There’s another autism blog called Grape Jelly On Pizza. She knows what I’m talking about. I’ll give my kid a multivitamin to make up for the lack of nutrition.

5. Getting dirty on the playground.

Every time I take Kyle to the playground I overhear at least one parent say, “You’re getting your pants all dirty!” What?! This is what playgrounds are for.

6. Watching TV during meals.

It’s not allowed for every meal, but again, you’ve got to pick and choose your battles. If having a show on will get him to eat more, then I’m putting a show on.

7. Drinking coffee. 

What can I say? My kid loves coffee. Is it good for him? Probably not. Is it going to irreparably harm him? Probably not. So when Daddy is drinking a cup in Kyle’s vicinity, Kyle’s most likely getting half. And if I can use coffee as a reinforcer to get him to eat other things, then that’s much better. I love coffee.

8. Not eating at the table.

We try to get Mr. Kyle to at least eat dinner at the table, but breakfast is a walking around and grazing meal.

9. Jumping in puddles.

Back at the playground I hear parents yelling, “Don’t jump in that puddle!” Meanwhile, I’m on the other end of the playground trying to teach my kid how to jump in a puddle.  Jumping in puddles is a right of passage, a part of growing up.

10. Talking too much or too loudly. 

My kid is completely nonverbal, so if and when he decides to start talking he can talk whenever, wherever, and as loud and as long as he wants to.

11. Sitting in the cart at the store.

We’ve been pushing him to walk more lately, and he’s been doing pretty well, probably partially due to his service dog and partially due to his school going on community trips every two weeks. But if we need to get in and out of Target quickly, or if Kyle is having a bad afternoon, I have no problem stuffing my 8-year-old into the cart and giving him a bag of popcorn and a book to keep him happy. Recently, we were in Costco and we were leaving a popcorn trail behind us throughout the store.

12. Jumping on his bed.

I can remember just a few years back when Kyle didn’t know how to jump and they would work at it in his physical therapy sessions. Now, he’s a jumping machine. And we encourage it. He’s got a trampoline in the backyard, a mini trampoline in his play room and he also uses his bed like a trampoline. If he grows another few inches he’ll be hitting the ceiling when he jumps on the bed. But we will allow it until the bed breaks or he hits his head on the ceiling… whichever comes first.

Those are my 12. I’d love to hear yours.

A version of this post originally appeared on Autism Daddy

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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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5 Reasons Why I'll Proudly Be My Brother's Caregiver

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On many occasions throughout my life, people have asked me about my twin brother’s disability and how I’d handle it when we grew older. I explained to them that his autism could hinder him from being able to complete many age-appropriate tasks, but my parents and I were prepared for it. He doesn’t drive a car, have his own apartment or go out for coffee with friends.

When I was 22, I told my parents I’d be willing to take the responsibility of caring for Daniel after they were no longer able to. We completed all of the paperwork and made it official over my university’s spring break last year: I became Daniel’s legal back-up guardian. I still have a lot to be educated on, especially with his finances and how to handle them smoothly. My parents were proud of me for making such a big decision at a young age. It wasn’t a huge deal to me because I thought about it for years and realized all of the reasons why it was the right thing to do.

Here are the five reasons why I’ll proudly be my brother’s caregiver years down the road:

1. My twin brother and I know more about each other than anyone knows about us. We were each others’ first friend or “womb-mates,” as I like to call it. Even though he has autism, I can read him like a book. I can tell exactly how he’s feeling just by one expression on his face, while he can do the same for me.

Our nonverbal communication works in mysterious ways. We could get a point across to one another from opposite sides of the room. If I’m laughing, he’s laughing. If I’m crying, so is he. I understand his quirks, his likes and his dislikes, and I know how to handle things when his behavior gets out of hand.

2. My twin brother and I have a solid foundation of trust. Unfortunately, we’ve all heard horror stories about people with special needs getting taken advantage of financially, emotionally and physically. As long as my brother is in my care, I can assure he will not be taken advantage of in any way. With that said, I have a difficult time trusting others when it comes to caring for him. He has the utmost trust in me as well, and building that foundation of his trust took many years.

3. He’d receive the positive social interaction I want him to have. I have a few close friends who also treat Daniel with love and respect. Those friendships have lasted because they make an effort not only to socialize with me but with him as well. On our birthday, they bring both of us meaningful gifts. He’s never left out. When we go out as a group, whether it’s to see a movie or eat at a restaurant, I take him with me. It’s such a positive experience for him because he gets out of the house and interacts with people who treat him well. I believe he really makes progress with his communication barrier after spending a frequent night out.

4. He’ll never have to feel uncomfortable. When he eventually lives with me, he can live how he wants with little restriction. He’s an adult, and I want him to feel a sense of autonomy and independence. If he wants to prance around the house dressed like Indiana Jones or a superhero, that’s not a problem for me. He’s also used to being able to have a snack and play on his iPad when he wants to at home; many living facilities may not let him do so, and that’s something that could set his behavior off. Most importantly, he’ll have a place to feel safe.

5. It’s what my parents would want. My parents know how close my brother and I are. Far into the future, they’d be happy their children are looking out for one another. My brother and I give each other pure joy. All my parents have ever wanted was for us to be there for each other.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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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How Searching for a Special Needs School Brought Me Closer to My Husband

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All marriages have ups and downs, and adding children can intensify whatever strengths or weaknesses already exist. But sometimes, if you’re lucky, this intensity can make a marriage stronger. 

For my husband and me, raising a child with a disability (in our case, high-functioning autism spectrum disorder), brought out differences in our parenting styles, fast. But in the end, our different perspectives enabled us to evaluate all of our options and come together for our son.

For example, although we had a good experience for the past three years at public school, kindergarten has been rough. We were afraid our son was beginning to fall through the cracks. He’s well-behaved and very bright, but definitely has learning issues and needs extra help emotionally and socially.   

When we spoke to his school, they told us their job was to bring special needs kids up to the grade-level minimum, but not to their full potential. For us, that was a clear signal it was time to go. 

My husband and I began to discuss our goals for a new school. We both expect our son to go to college. But my husband knew our son would need a smaller class size with teachers who would push him. It was important to him that our son was included. I knew he needed a school with a strong arts program and the space to be a goofy kid and tell poop jokes.

It didn’t take long for the process of researching and visiting schools to become stressful and overwhelming. I toured over 10 schools between December and April of this year. I’d made the initial assessment, and then together, my husband and I discussed the pros and cons. If we were interested, we made a follow-up appointment for my husband to take a tour.

My observations tended to be more intuitive. My husband’s were always more specific and detailed. But it turned out to be a perfect balance. Together we decided where to apply. Even though we had different reasons and thought processes, we generally came to the same conclusions. This way, it seemed, we always covered all our ground.

Through this process, we learned a lot about ourselves and about each other. I learned that my husband has insights into the schools and our son’s needs that I don’t have and vice versa.

My husband is a lot like our son in some important ways. He was different growing up. He needed extra help, and he felt like an outsider. So when he tells me how he thinks our son will react in certain educational environments, I listen to him. I’ve learned to trust his perspective, as different as it can be from mine. He trusts my instincts as well.

I also was different growing up. Though I didn’t have any specific learning disabilities, I now think I have sensory processing issues around sound and auditory information transfer. I’ve also got a mood disorder that has, thankfully, not shown up in our son. But I know what to look for. 

In trying to understand our son’s needs, I’ve developed more tolerance for my partner’s eccentricities as well. My husband needs his routines to feel safe, and in the past that’s made me feel like I’ve done something wrong. I now understand that it’s not about me. It’s the way he was built, and the good far outweighs the bad.

Finally, we’ve learned how important it is not just to tolerate, but to embrace each other’s point of view. When I started to really appreciate my husband’s differences instead of insisting that he think like me, it strengthened not only our ability to make decisions, but our relationship.

In the end, our son was accepted to a college prep/mixed disability special needs school with drama, art and music programs. Although we had different reasons for choosing to send him there, we were in total agreement.

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The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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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To All Parents of Children With Autism Who Haven't Taken a Break Today

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As parents of children with autism, we’re responsible for a lot.

I’m not saying all parents are not responsible for a lot, because they are too. All parents have the responsibility for caring for a little human life. That’s a big responsibility. But my fellow autism parents know that caring for a child with autism requires a little extra.

When I get up in the morning, I have to allow myself time to get ready for work, dress myself in clean clothes and find time to put makeup on and look like a human instead of someone who only got four hours of sleep.

I have to allow even more time to get my son up while trying to keep him calm and well-adjusted for his day. Getting him dressed sometimes requires the help of another adult. So does combing his hair and brushing his teeth. I try to keep his routine the same so I don’t induce meltdowns. He has to have his supplements and vitamins while I’m trying to pack his lunch and write notes to his teacher about anything that may have happened at home last night. We get him on the bus and hope he has a good day at his special education school.

Transitioning him from his school day to the rest of the day at home can be challenging. He’s restrained himself all day long and is now releasing himself at home. He is aggressive toward his brother. Meal times are difficult but need to be kept on a schedule. He needs sensory breaks often to get the stimulation he needs. He needs exercise or else he won’t be tired enough to sleep at bedtime. He is very attached and needs lots of hugging and cuddling throughout the evening. He doesn’t like to sleep alone and usually wants to spend most of the night asleep next to someone.

This is just a typical day, too. This doesn’t include therapies, doctor’s appointments or meltdowns that may last for hours and tire us both out.

When do you find time for yourself? It’s hard to take care of other people when you don’t find time to care for yourself. I struggle with this daily. I find myself exhausted every moment of every day. Even if I happen to get a full night’s sleep, I still wake up feeling mentally, physically and emotionally exhausted. Some evenings I don’t have the motivation to get up off of the couch to give my children a bath. Some nights I don’t want to be touched nonstop. (My son is extremely sensory seeking and is constantly touching me at all times. Just me and no one else.)

I often daydream of having a whole day to myself to do whatever I want. I want to take a long, hot bubble bath while sipping wine. I want to go out for hours and drink coffee while it’s still hot and go shopping. I want to lie on the couch and work on my laptop or do a cross-stitching project. These are all things that I want to do for myself.

And guess what? I deserve to do these things. And so do you. This is called self-care. It’s important.

Self-care is actually just as important as caring for your child. We want to give all of ourselves to our children. We want to be everything and comfort them and meet all of their needs at all times. We can and we do. But ask yourself this: are you meeting your own needs, too?

I know that I spend most of my spare time doing something for my children. I’m reading a book on autism or researching a new doctor, my son’s behavior, supplement or therapy. My days revolve around him, and I like it that way. I’m his mother, his parent, his advocate and his warrior.

But we need to take care of ourselves. We deserve a few moments of “me time” to help with our sanity. We deserve to take care of ourselves physically, whether it is going for a run, practicing yoga or lying on the couch and resting. We deserve to go out for coffee with a friend or on a date with our spouse.

Don’t feel guilty for taking a break and spending some time doing something for yourself. Everyone will understand. Your child will understand. It will help you to be the best you. If you can’t be the best you, you won’t be able to be the best for them.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio.

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