How to Satisfy 6 Kinds of Sensory Needs for Kids With Autism

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When it comes to sensory seeking behavior and feedback, what helps my children might help yours, though maybe in different ways.

What are the different kinds of sensory seeking behaviors?

1. Oral: Anything that provides a mouth feel, like chewing, licking and biting.

To help redirect this, there are Chewys and chewlery available online. For children who only choose to chew on material, a clean washcloth or wristband will help.

2. Tactile: Your sense of touch. A child who likes to seek out tactile sensory experiences may stroke and touch many different textures.

For children who are tactile seeking, having a bag of items to feedback from is a good idea. Encourage them to touch a variety of textures. For example, your bag could contain a first-aid crinkly blanket (space blanket), bubble wrap, soft fleecy materials, pine cones, carpet square samples, astroturf samples, feathers, large seashells and smooth, cool stones to feel.

sensory-seeking-behavior-lead-04202015

Some stretchy toys are great to fiddle with for tactile feedback, such as spongy toys and rough items like tree bark.

3. Olfactory: Your sense of smell, so lots of sniffing and seeking new, attractive smells.

Empty soap bottles are very good for olfactory sensory seekers. Simply wash out, dry and put in colorful pom-poms soaked in vanilla essence or lavender. An empty jar with a few holes in the lid stiffed with lavender is a good calming tool. Make sure they are closed good and tight; a glue gun is excellent for this.

4. Proprioception: Your sense of where you are in space, where your feet end and the floor begins.

Children who have proprioceptive seeking tendencies may stomp, tread heavily and sit down hard for the impact.

For children who are sensory seeking by bouncing, provide crash mats and trampolines for proprioceptive feedback.

5. Vestibular: A vestibular seeker will enjoy spinning and rocking, and they may enjoy swinging.

Spinning and rocking is seeking to balance the vestibular sense, so swinging your child gently in a hammock-shaped sheet is great for this, as are sit-on spinning toys.

6. Visual: The sense of sight. A visual seeker will enjoy looking at different lights and colors.

Sometimes children enjoy tilting their heads to one side to watch car wheels spin, or squinting to change their visual perception.

Visual seekers will enjoy bubble tubes, fiber optics, sand timers and light up toys that are visually stimulating. For more visual fun, try tinted lenses glasses and a bubble machine.

These are all things my children enjoy and I do hope they help yours. If your child is flooding the bathroom, playing in the toilet or tipping your shampoos out everywhere, they are sensory seeking. They are not misbehaving; instead, redirection is what’s called for.

Sensory play is easy and fun and needed for our children with sensory needs. It helps to ground and regulate them.

Some cheap, easy examples are:

  • Water play, bubbles, foamy soap , bath paints and empty bottles for pouring.
  • Rice, lentils, pasta and dried beans for pouring. Never use black beans or kidney beans, as they are toxic until cooked.

boy catching bubbles outside

These are things that will help calm and stimulate your children and in turn keep your sanity intact. Above all, they are fun and children learn through what they experience in their environment.

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The Day I Was Able to Protect My Son

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It was a beautiful, sunny day in North Florida. The skies were clear, the temperature was a cool 45 degrees and we were on our way to the state park to learn about the Spanish versus the French and how they settled at Ft. Caroline. Our park ranger, Herb, was an amazing storyteller engaging all the kids on the field trip about the history of our amazing state.

I felt pure joy taking in the sunshine, filling my mind with knowledge and spending time with my son in nature away from syringes, drains, bags and doctors. It felt like a fairytale, but then my phone rang. I recognized the number instantly.

I am a worrier; it’s not my best trait but at times, it can serve me well. I try not to ever miss an incoming doctor’s phone call. If for some rare reason I do miss a doctor’s call, I am texting the doctor back immediately or calling the office obsessively. Yes. I am “That Mom.” However, something came across me this day when my phone rang. I stared at my phone looking at the incoming call from the doctor’s office and I debated as to whether I wanted to answer it. Why? What had happened to me? It was as if my fingers had frozen and could not slide the bar across my phone screen to answer the call to say hello.

Hindsight is a gift and makes things clear in time. What happened to me was I needed a break, a day to take in God’s beautiful world and healing graces. I needed a day to dry out the rainy days to bask in one glorious sunny day. I needed a day to see my son be a child and play free of fear and worry of what the next hour might bring. It was a perfect day until the phone rang.

What did I do, some might wonder? I did what each of you parents on this same exhausting journey would do: I answered the phone. Why? Because we rise above and we know we must take care of our children. We search for that inner strength when our perfect day has been interrupted. Perfect days don’t exist like we hoped and dreamed they would.

“Hello.”

“Hi Lauren, It’s Dr. R… I needed to let you know that the medication we are using is not working for…”

The rest of the conversation needs no explanation, as any mom or dad on a similar journey can fill in their own version of an ending to the phone call.

And so I hung up. I walked for a second, sad that we continue a vicious cycle. I did not tell my son about the phone call because in the grand scheme of our journey, this was not a big deal, I guess, or was it? I don’t know anymore. I’m desensitized and so unless it’s really bad, so I am mostly non-receptive these days to redundant news. Layers build and I melt. They rebuild again. I melt again. It’s a cycle. Choosing a photo filter to view my life through each day becomes my motto. Clear? Blurry? Process? Transfer? Fade? Or None?

People often tell my husband and I that we are strong. They tell our sons they are strong—both sons—the one carrying the direct load and the one carrying the indirect load. We are not stronger than anyone else in this world. We soldier through life as anyone does ready for battle to take care of their family and loved ones. We do rejoice as often as we hurt. We become numb to bad news, but never numb to the care and love from those who surround us.

Six weeks have passed since I initially wrote the beginning of this blog. I remember that phone call well, because at the sunset of that North Florida day, it did end up being a big deal.

In the end though, the day was perfect in my son’s memory. We dealt with the news accordingly. What my son remembers is a perfect day with his friends exploring Florida history, Herb’s kindness, running around, having a picnic, climbing trees and being a child. There are times when I can’t protect my son from his suffering, but this one day, I could.

Because his day was filled with childhood perfection, my day is now remembered as perfection, too. Perhaps it’s time not to live for finding a perfect day, but for finding the perfect in each day.

This post originally appeared on HOPE.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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An Open Letter to Women’s Health Magazines

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I remember the first time I really looked at one of you, standing in the CVS line, clutching my disposable razors and gummy vitamins. I read your headlines, boldly lining the model’s sculpted abdominal muscles. Here is what I learned in ten seconds: My salad topping choices could be ruining my salad’s nutritional quality, there’s a seed I’ve never heard of that speeds up your metabolism, and there are 12 recently discovered benefits of eating avocados. Fearful that I would continue naively choosing the wrong salad toppings forever, I bought you. We shared the couch. In one hour of reading I learned more about food than I’d ever known; I felt smart and informed. The world was full of secrets, but you promised you had the answers. I vowed to never add croutons to my salads again.

I wondered how I’d survived years of poisoning my body with caffeine and artificial food coloring. You taught me about the dangers of granola bars, fruit juice and low-fat alternatives. Together we began a journey to find my perfect health. We looked for it together — in your pages, in kickboxing classes, in cartons of cottage cheese. You came to me when my life was in shambles and empowered me to take control of something tangible. I was utterly lost, but you told me I could be perfect, and perfection would bring me happiness. We would do it together. 

Quinoa is better than brown rice, you said. Be cautious of grapes; they’re the sugariest fruit. Celery has negative calories, snack on it often. “The foods that will give you the hair you’ve always wanted.” Careful though, you said, too much olive oil can add extra calories. Too many almonds can result in a higher BMI. Cut them out, just in case. Kate Hudson swore the reason she wasn’t losing weight last year was because she was constantly snacking on cashews. Silly Kate! I cut out cashews immediately.

I’m a student with a 4.0 GPA; I’m excellent at taking directions. I followed your rules flawlessly. Everyone was noticing the changes. Those first few months we spent together, you gave me everything. I was your perfect student. I was perfect.

Remember those issues about how to not overindulge during the holidays? I stood aside my sister in our childhood kitchen while she served everyone her famous Christmas pudding recipe. My family sat together dipping their spoons into tiny clouds of marshmallows and cream. I don’t remember anything from that day more than I remember the pride I felt, staring into my empty bowl. My family’s bowls were full of sweet delicacies, but mine was full of power. 

To take up the time between monthly issues, I started reading nutrition books. I read that dairy throws off your body’s natural pH levels. Eating animal protein leads to cancer. Gluten leads to gut inflammation. Eliminate. Eliminate. Eliminate. Stick to your rice, beans and vegetables, and you’ll always be safe from disease. You will be pure. Never white rice, though, because it increases your risk of diabetes. Not too many beans, though, because they contain lectin which increases inflammation. Not nightshade vegetables, though, because they contain alkaloids which cause stress. I would clean myself of all my toxins. Through eating, I would become pure, like snow.

Remember the first time I spit out my food? You told me Europeans were thinner because they stop eating once they are 80 percent full. Worried I’d crossed the precious line, I carefully chewed the piece of sushi in my mouth, counting slowly. Regret. Regret. Regret. My friends sat around me lost in conversation. I sat lost in a series of calculations: How many calories had I had at lunch? How many did I have left to spare today? I chewed slower, thinking only of the handful of nuts I shouldn’t have had after lunch, and vowed that I would not swallow. I excused myself, went to the restroom and spit the $22 tuna roll into the toilet. I’d read the heavy metals in fish are linked to heart disease anyways. You were proud.

On a bed of your pages, I laid in our new cage. I couldn’t get out, but at least nothing could get in. If I never ate unsafe foods, I would never get sick. If I stayed thin, the world would be too scared to touch me. If no one could touch me, I could never feel pain. I went on disintegrating under iron bars. Safe and light, like snow.

Remember the first time my hair fell out? I tied my hair up on top of my head and watched my father’s heart break open onto the floor of the hotel lobby where we were standing. A 60-year-old man sees his baby daughter’s scalp for the first time since her infancy. I flipped through your pages, desperate for your never-failing guidance. You told me to shampoo with apple-cider vinegar.

When I realized I’d developed orthorexia nervosa, an obsessive-compulsive disorder rooted in an unhealthy obsession with healthy food, I told no one. Silent, like a 1950s housewife stays close to her cheating husband. You’d betrayed me, but you were all I had. Your rules were the stitches barely holding me together. I picked them out slowly, watching everything we’d built fall to pieces. We suffered through those last few months, both of us aware of what was coming. My quest for eternal health would kill me. I would have to let you go.

Dear women’s health magazines. Dear my beloved brown rice and heads of purple cabbage. Dear my precious seeds and super-food powders. Dear my perfect self. The time has come. I thought I had a wondrous future. I thought if I prioritized my health, all other aspects of my life would fall into place flawlessly. I didn’t know I’d develop paralyzing food fears or that I may never have children. I didn’t know my skin would turn to cellophane. I didn’t know my knees would shake on the stairs. My beloved book of knowledge, I am tired. I am tired.

So I’m abandoning my pursuit for perfection to begin recollecting my flaws. I want to wear them proudly like a string of pearls, sharing them with others and gushing over theirs. I’m unlearning you, stitching myself back together with mismatched, imperfect threads. I learned how suffocatingly lonely it is to be perfect, to dedicate yourself to achieving something that doesn’t exist. There is no perfection! There is no control! We’re leaves in the wind with little say in where we will be blown. And when we get where we’re going, when we land in fields of daisies, we don’t chose when winter will come to melt us into the ground. It’s terrifying, but I’m trying. I’m trying. I’m letting you go, my perfect self. I’m shedding you to give into my beautiful fears, to give into what I cannot control. I’m submitting to the wind just like everyone else.

We’re falling, powerless, honest, like snow.

If you or a loved one needs help please call the National Eating Disorder Association hotline at 1-800-931-2237.

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6 Challenges That Come With Being a ‘Passing Aspie’

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You probably know me.

At least, you’ve seen me around town. I look just like any other soccer mom, after all. I have matched clothes and cared-for hair, and I go with my soon-to-be-stepdaughter and fiancé shopping at the mall and to the movies like anyone else. I had affluent parents and a good education. I was quiet and shy but sweet and was in the chorus and the National Honor Society in high school. I went to college and got a job, gave polite smiles to my coworkers in the hall and maybe even chatted you up at a cocktail party. I had a marriage that sadly ended in divorce and survived it stoically. I am sure that you know me, or think you’ve met someone just like me.

But the truth is that you don’t really know me at all. Like millions of others, I have what is called an “invisible disability.” Invisible disabilities are those that one cannot see on the surface. Many intellectual and developmental disabilities (I/DD) fit into this category, such as learning disabilities, mild autism spectrum disorders like Asperger’s syndrome and mild cerebral palsy.

I’m a “Passing Aspie” – one of the ninjas of the invisible disability world. You have to know us fairly well to ever see our truth.

I coined the term “Passing Aspie” (short for Asperger’s). Asperger’s syndrome is a mild form of autism in which a person can speak clearly and has an average-to-devastating level of intelligence, but goes through life with social difficulties and often sensory issues. Even if you think you don’t personally know anyone on the autism spectrum, you have seen “The Big Bang Theory” and understand the portrait of Sheldon that is being painted there.

Passing Aspies are different. We are the people on the autism spectrum that you do not see wearing a visor to avoid fluorescent lights. We have learned to adapt, and honestly I doubt there are any accurate numbers on how many of us are out there because we rarely get formally diagnosed. That said, our inner brains and inner lives share autistic traits, and you cannot know our challenges unless we tell you. So today, in honor of Autism Awareness Month, I agreed to try.

1. Eyes and Excuses

More likely than not, you have noticed that people on the autism spectrum have difficulties with eye contact and visual recognition. I wasn’t diagnosed with Asperger’s as a child but I spent my childhood at war with my eyes. I have always been (and still am) visually unobservant and often use my other senses to compensate. I am nearsighted in the extreme but do not feel a need to wear glasses because my sensory world is still rich in so many other ways.

I spent my childhood with total face blindness, but I didn’t know what to call it. I never heard the term until I was old enough, through painstaking neural rewiring, to recognize at least the faces of those I saw frequently and the people I loved. (I still can’t recognize familiar actors in movies sometimes if they change their makeup or hair.) I learned to say the things that people expected to hear to explain why I couldn’t make friends in preschool. I was “bad with names” and couldn’t remember them. I was shy. Or I “didn’t need friends.” Or the “other kids didn’t like me.”

The truth was both more obvious and far scarier: I couldn’t recognize anyone. If I played with a little blonde girl on the playground one day, I had no way of ever finding her again. I had no words to explain this because I was unable to comprehend why this was. I just figured that other children were smarter and better at seeing visual cues. I would try to tell my mother, but I doubt she ever understood the whole truth. I am sure that other children thought I was snobby or weird for pretending like we had never played together before, and so I was lonely.

The eye problem most commonly associated with people on the spectrum is, of course, eye contact, and I have that problem, too. People always ask me why I can’t make eye contact. Actually, I can and do force myself to make at least brief eye contact with others as part of my passing act. But extended eye contact is emotionally painful if I am not truly intimate with you. The closest I can get to describing how it feels to me to meet someone’s eyes is to compare it to the feeling you would get if asked you to stare at a stranger’s naked body for several minutes. It feels embarrassing, awkward, invasive and socially wrong. I can hold my mom’s gaze or my fiancé’s (I do see him naked, after all), but socially it just feels embarrassing. So I let people think that I am just shy.

2. Sensory-Overload Pokerface

In many ways, the hardest part about dealing with Asperger’s both as a child and a passing adult is sensory overload. I use my ears to compensate for my eyes and am better at recognizing people’s voices than faces. I am also a great mimic with an audiographic memory. This came in great handy for school lectures or eavesdropping (I got away with this like you wouldn’t believe.). But there is a dark side to sensory sensitivity!

I cover my ears while during fireworks and was afraid of the hairdryer until I was 5 years old. My sense of taste was way over the top along with my sense of smell, causing sensory pain that most of you cannot even imagine. On hot days in enclosed spaces, I would feel that I was suffocating because I could smell the individual odors of every person in the room. All of those different smells mixing together would make me dizzy, but what could I do? I was aware enough to know that no one else could smell what I did and that no one would believe me.

I gag at the bitter taste in vegetables. Needless to say, adults weren’t buying my explanation and accused me of faking it. Fruits have very strong smells that overpowered me. For nutrition, I had to take vitamins and eat baby food well into the first grade. That ended after a friend told our whole class at school.

But these are only minor challenges compared to some of the invisible demons that come with my invisible disability.

3. Invisible Moat, Invisible Alligators

I have often been asked about the worst part of being on the spectrum. This is where the monsters come out. Sexual abuse is very common among people with intellectual and developmental disabilities (I/DD), three times more likely than for children without disabilities. When you realize that one in every five women is in the U.S. is sexually assaulted as a child, you can see that many people with invisible and visible disabilities alike might be sexually assaulted every day. I was no different.

I know you are wondering what kind of person would put their byline on an article that included this detail, and I will tell you. It’s a person determined to break the silence. I had many strikes against me when it came to getting help and healing for my abuse. Questions that parents normally ask children to get them to open up completely went over my head. I didn’t even understand that what I was forced to do was sexual abuse; I saw it as punishment and figured it was normal. And I lacked the courage and the words to confront any adult’s behavior as “wrong.”

I want to let you know that although it is difficult to know if a person with an invisible disability is being abused, it is not impossible. Look for signs and read between the lines. We are human, and we do feel pain. For example, a scared child who is at a loss for words and calls her babysitter “mean” may be trying to tell you something, especially if she doesn’t verbalize negativity often. You may also notice that under the stress of abuse, the invisible disabilities in your child multiply. From age 6 on, my self-esteem plummeted. I developed claustrophobic behaviors and panicked if I had to wash my hair under the shower. I also spent larger amounts of time alone in various hiding places around my home. In addition to my increasingly apparent post-traumatic stress disorder, I suddenly began suffering from obsessive-compulsive disorder, and began to behave erratically and suffer nightly insomnia. In another child, these would have been extreme warning signs, but because my behavior was somewhat odd to begin with, due to the autism, people let this go as more evidence of my disability.

4. Dragonslayer

So what I just described is a far cry from being a Passing Aspie, you say. Well, that took many years and a lot of hard work on my part. I focused hard on grounding techniques, which helped me to mentally stay in the room with my classmates and break out of my dissociations. I worked up the courage to make one or two close friends, and as I fought to memorize their faces, the fog in my neural pathways lifted, and I began to see other faces. I practiced friendly facial expressions in the mirror until they felt less awkward. I traded homework help for social comfort.

By high school, my hard work had begun to pay off. New neural pathways took over my brain, and being social began to feel more natural. When I cracked under the stress of completing an extra hard course load with obsessive-compulsive disorder and became clinically depressed, I was finally got the treatment and medication I needed. One of my psychiatrists even figured out that I was on the autism spectrum. It was too late to truly benefit from services at that point, but knowing that I had a real disability and wasn’t just defective as a person helped me to forgive myself. I am proud of the work I did to make my life come together.

I have never been more proud of myself than the day I earned my Masters degree in Social Work and walked across the stage at George Mason University. I held several jobs working in foster care placement, a homeless shelter, and a nursing home and am proud to say that I never once got singled out as an Aspie or told that my work was impacted by my disability.

5. Am I Magic?

I get asked about “special” talents often. People want to know if I can do magic tricks like multiplying large numbers in my head or know what day of the week November 12th, 2028 will be. The honest but disappointing answer is that I do have a savant talent, and I just told you all about it. Being a Passing Aspie is harder than it looks. I don’t have the genius of many on the spectrum, but being me requires conjuring more strength, endurance and effort than you know. I noticed that unlike a lot of people my age, who typically sleep seven to eight hours a night, I need nine or ten hours to feel rested. I believe that this is the extra energy that my brain uses to filter out the sensory distractions and social challenges so that I can pass successfully.

By the time you notice the horrible beeping noise coming from the microwave at McDonalds, it has been hurting my brain for five minutes or longer. I no longer hear it, however, because my mind subconsciously noticed this immediately, determined that it was enough to make me crazy, and filtered out the noise. Also, the energy it takes me to make casual conversation with acquaintances and make eye contact while doing it would rival what it takes nuerotypical people to give a high-level presentation at work. My trick is that you don’t see it.

6. What Do You Mean, I Lack Empathy?

My biggest complaint as a Passing Aspie is listening to people go on about how people with autism lack empathy. Excuse me, but says who? Isn’t what you really mean that people on the spectrum don’t understand how YOU are feeling??

The truth of the matter is though that you don’t understand how people on the spectrum feel any better than we understand you. More than half of the time, you don’t even spot me hiding in the crowd. Before you reject this theory, ask yourself if you could do what I do every day of my life and pass in a room full of people on the autism spectrum the way I pass among you. Didn’t think so!

I don’t want to criticize neurotypical people. It’s just insulting and hurtful me to hear that I am believed to lack empathy when my best savant talent has been to develop empathy at such a level, that I cannot only pass as neurotypical and live in your world but very often translate between people on the spectrum and people who are not and represent both with a startling degree of accuracy.

If you have read this far, I want to thank you for having the empathy to hear my words and relive my struggles with me. Please show this empathy to others with invisible disabilities and imagine them walking in very uncomfortable shoes. If you truly can’t do this with compassion, then please keep it to yourself and do not talk about what you think you know about my autistic brothers and sisters.

A longer version of this post originally appeared on United Cerebral Palsy.

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‘How Do You Do This Every Day and Not Get Pissed at God?’

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“How do you do this every day and not get pissed at God?”

This was the second question I was asked recently about parenting an autistic child.  This question I answered simply: “I am not mad at God because he is my son. I understand him to the best of my ability. I get to see what he struggles with every day and know that from his perspective things are SO different, that none of this is his fault and he was made by God to teach everyone in his life that he meets a lesson”

The truth is that this question is such a loaded one: How DO I do what I do every day and not get pissed at God?

Maybe I should start with the fact that I believe that everyone comes into our lives for a reason, no matter how quickly that point of contact might be. I believe that our children pick us before they are born because they have lessons to teach us.

If I were to be mad at God, would it be because my beautiful youngest son has autism?

What about the fact that my amazing oldest son has ADHD and SPD, was developmentally delayed, blind in one eye and suffered through combative panic attacks for the first four years of his life?

Should I be mad at God for having me be born into a situation where I will never know my biological parents? That I was then adopted into a family that would fall into the statistic of divorce a couple years later?

Maybe it should be for the interesting life I’ve lead… Dealing with my own ADHD, depression, anxiety, abusive relationships, addiction, cutting, being suicidal and only seeing only the worst in myself for years?

Should I be mad because the only love I thought I deserved for years was the love from a one-night stand because I felt that I wasn’t deserving? That I was broken and who could love that?

How about knowing what a psych ward looks like because I’ve had to go there a few times when I was an adolescent?

What about when I was told I would never have children, only to get pregnant and have a miscarriage that ripped my marriage apart?

I could be pissed at God for so many reasons! Really I could, but I’m not.

I am more spiritual than religious, to be honest. I believe that every twist and turn in my life was a lesson I needed to learn to get me where I am today. All of the chaos, sadness, guilt and pain I needed to learn what it felt like not to be “normal” and to grow into the unique, brazen person I am today.

Without my kids and their mold-breaking personalities that come with alphabet soup, I would be lost; my purpose would be non-existent. I would be a woman searching to find her passion and definitely would not be the best version of myself.

My son, Bubba, made me the person I am today. He helped me realize that whatever was thrown at me I could handle. I was stronger than I thought. He is the reason I stopped feeling like less than good enough. The persistence, courage and moxie he has helped me understand that my expectations of life and parenthood were wrong; I needed to look at our lives differently. He helped me find my voice and showed me what unconditional love is.

My other son, Beast, has shown me how to listen, really listen. He helps me slow down and break things down. He’s taught me that I need to let go of even more of my type-A personality. The patience that I have found within me is amazing. My intuitive nature is so much stronger and my attention for detail has been sharpened. He has shown me a whole new way to look at the world, that I need to let down my guard a little more, be more open to ask for help and that my tribe of crazy is shifting, but that’s OK. I have to make choices that are right for him, even though they go against my moral high ground.

So how do I do every day without being pissed at God?

I do it because they are my kids, my world, and without them, I would be lost.

meghan hanley kids the mighty

This post originally appeared on Finders Seekers.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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Want to Know What It’s Like to Go Out in Public When Your Child Uses a Wheelchair?

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Let’s say you have a clown baby.

Now, before I continue, let me be clear: I know this sounds crazy, but just go with me for a moment. Use your imagination. You can do it.

OK, like I said, you have a clown baby. By which I mean your baby is dressed like a clown. Your little bundle of joy is sporting a round red nose and a powder white face. The kid’s got a painted smile lacquered from ear to ear and a puffy red wig that would make Ronald McDonald green with envy. And then there are the shoes – don’t forget the shoes. Your clown baby has got big shoes. Long and floppy, bulbous and yellow. With neon pink laces for good measure.

Can you picture it? Can you feel the weight of this rainbow-colored darling in your arms?

Wonderful.

Now, imagine you’re walking through the mall with your clown baby toddling along beside you – maybe you’re holding hands or maybe you’ve got them on one of those baby-leashes (no judgment) or maybe you’re corralling the little rascal towards Starbucks so you can snag some caffeine before it’s time to go – when, suddenly, you raise your eyes and glance around. You see fellow shoppers moving to and fro. And what do you imagine they’re doing?

You see it don’t you?

They’re all watching your clown baby.

All of them.

Most of them are sneaky, stealing quick glances that bounce from you to your clown baby to the shop windows then back to your clown baby in a continuous loop. Some of them are shameless, grinning good-naturedly and nudging their companions saying, “Oh my goodness – do you see that?! So cute.” Children are the most dumbfounded, dragging behind their mothers, heads turned, jaws hanging slack. You’ve seen children stumble directly into oncoming pedestrians, solid walls and – on one occasion– a metal pole because their eyes were fixed on your clown baby rather than on the path before them (true story).  Groups of teenage girls are the loudest with their happy gasps and sitcom worthy “aww!”s. You once caught the entire Sbarro’s pizza line smiling and waving and discussing your clown baby together.

And at first you think, “My goodness – it’s like these people have never seen a baby dressed like a clown before!” But then you realize, they probably haven’t. They saw one on a poster once or on the news when the circus passed through town, but in real life? This is their first time. Of course they’re making a fuss. Can you blame them? For heaven’s sake, you have a clown baby.

Strangers stop to chat. “We’ve never seen such a well-dressed clown,” they say. “We didn’t even know they made clown noses that small!” 

“Seeing your clown baby just makes my day!”

“God bless you and your clown baby.”

“Your clown baby is something else. Just precious!”

You’ll nod and smile. You’ll small talk and wave. You’ll tell your clown baby to say hello. You might even enjoy it a little. That’s OK. I mean, if you think about it, are you really surprised? What did you expect? Is there anything cuter than a clown baby? They’re novel and different and surprising. They’ve got fantastic hair and flowers that squirt water. People certainly don’t see them every day.

Besides, no one is being cruel. Everyone is being positively dramatically spectacularly kind. Do their stares and smiles and comments make you angry? Of course not. 

But they do make you a bit, well… tired.

Because you quickly realize it’s not just your clown baby everyone is watching.

They’re watching you too.

They’re watching to see if you’re happy. They’re wondering if you’re sensitive about your clown baby or worn down by all the toil and hardship that goes into caring for a clown baby (they’ve heard that baby clown makeup takes a full hour to put on!). They’re taking their cues from you. They’re learning from you. And since this may be the only clown baby these people ever see, you feel immense pressure to convey to them the truth of your circumstances – to show them much of what they think they know about clown babies and the people who love them is wrong.

So you’re approachable. You’re open. You smile. 

Come to think of it, you haven’t frowned in public since your clown baby was born.

And sometimes that’s hard.

It’s hard because even though you just came here to return one ill-fitting pair of leggings and you’re frustrated because clown baby is swiping all the gosh darn sunglasses from the kiosk display and tossing them willy-nilly onto the floor and you’re this close to really losing your patience… you can’t show it.

Because you’re not invisible. You do not blend in. And you’re afraid if you reveal even a hint of discontent, all those strangers behind all those watchful eyes will think one thing:

“Well, of course she’s stressed. Not surprising, really. It can’t be easy… after all, look at that baby of hers.”

So you grin and you chat. You get your Starbucks while your clown baby tosses coins into the fountain.

And you hope your smile is making a difference, however small. So maybe, one day, when your clown baby is a clown adult, the world will be ready for all the wonderful things he will do.

In the circus.

Or wherever he wants to be.

I know this is completely ridiculous, but I was trying to explain to a friend what it’s like when we go out  and this is the best I could come up with. At first, I thought maybe I was imagining all this, but we’ve gone out with enough friends and family members to have the oddity of our situation confirmed over and over again. As my sister said “Wow — everyone is looking at us. It’s kind of… a lot.” Yes, it is.

So, what’s it like for you? If your child has visible differences, can you relate? Does anyone else find themselves constantly smiling in public because you know people are watching? How do you think all of this affects our kiddos? Does our response affect our kids? If you don’t have a child with a disability, what do you think when you see a family like ours out and about?

This post originally appeared on What Do You Do, Dear?

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