Don’t Feel Sorry for My Autistic Child

682
682

I have four daughters. Two are autistic. Sometimes throughout my travels in life I encounter some people who I need to explain my girls autistic behavior to — because maybe they don’t understand. It could be at the library when someone is too loud and my daughter gets upset and covers her ears. Maybe it’s at the beach when she gets wet sand on her legs and begins to have a meltdown because her sensory tolerance is just lower that day. Or it could even be on an extra hot day out and about and she’s just not coping. When I explain to onlookers that my daughter(s) are autistic, I often get the response, “Oh, I’m sorry” or “Oh, that’s a shame” or “Oh, that’s sad.”

I just want to explore these comments.

OK. Having a child who is autistic can be hard. There are often times when it is so hard that you don’t know if you can handle it. But you do because you’re a parent of a child, and that means loving them unconditionally. Autism forces you to find other ways of doing things, it makes you aware of things you may have never considered before, it enables you to find a patience, tolerance and compassion for your small person that you never really thought was possible beforehand. You want them to grow up in a tolerant, understanding and loving world. So you model this as often as you can.

So yes, it is hard. I will not deny that.

But having an autistic child is not a death sentence. It is by no means the worst possible thing to happen to a parent. It does not mean your life is over. It does not mean their life is over. So you can shove your pity, your sadness and your condolences. I don’t need them; and my girls and their sisters and my husband don’t need them either.

I’m grateful for my autistic daughters.

They’re loyal. They will stand by you, even when you’re a flakey friend. They will root for you when others bail. They will continue to love you even when you’ve been an a**hole. They won’t judge you without real reason, and if you’re lucky enough to be their friend they’ll embrace you and love you for being you. They’re forgiving, and they won’t let you down.

They’re  intelligent. They have so much knowledge to share with you. It could be one of their few (or many) special interests, or it could be learning new things together. They have a thirst for knowledge, and if you take the time to find out what ticks their motor and find out how they learn, you’ll find your world becomes so much richer because of it.

They’re diverse and interesting. I bet you’ve never taken the time to ask an autistic person with a method for the way they eat things in a certain way, why they do it that way. I am sure you’ve never really noticed the reason someone who is autistic may wear sunglasses a lot is because they’re sensitive to light and sunglasses enable them to be more comfortable in social situations. I doubt you’ve ever made the realization as to why someone who is autistic really loves circles because they’re smooth and concentric, and this is reassuring. People who are autistic are fascinating to spend time with and have diverse interests and preferences. Not only do they perhaps like things a certain way, but once you spend time with them you realize it’s actually perfectly OK to have these preferences. Autistic people will expand your level for tolerance and color your world.

So don’t feel sorry for my autistic child.

Follow this journey on GirlTribe.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

682
682

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When My Son With Autism Wore Bright Orange Headphones at a Play Area

5k
5k

We slid the headphones on, and his whole body relaxed.

Tension we didn’t even realize he had vanished. He looked up, alert and interested with shoulders pushed back instead of hunched. He seemed taller, stronger. He was also the only kid wearing bright orange headphones in the play area.

1614230_1003054053085258_3329368793649274814_o
Kitty’s son.

I hadn’t realized how much the noise had bothered him and how much he’d endured. The edginess he usually had in crowded, noisy spaces was gone. He was swimming through the crowd and heading towards the climbing equipment. He threw a quick smile back at us before he commenced climbing. He was determined and he looked happy.

We were in shock.

He loved play areas. He loved climbing, spinning and hurling himself into ball pits to be buried over and over. But there was always a cost. We always watched for the moment when the scales tipped from engaged to overwhelmed, so we hovered around him like dragonflies.

Not on this day.

He’d mentioned noise a few times but in different contexts. Sometimes he wanted things louder, sometimes softer. We couldn’t find the sweet spot, and he’d get frustrated trying to articulate it. We bought the headphones as a shot in the dark. They were fluro orange because that was his favorite color. Plus, it had overtones of construction sites, another plus for a 5-year-old boy.

He didn’t see the stares and the eyes following him around. We were proud of him — this boy who’d found a way to negotiate his circumstances and turn a world that he loved into one he could take part in without pain. For now, at least.

He gracefully moved through crowds of children, skipped around belongings scattered on the floor and took his place in line for the giant slide. He waited peacefully, occasionally guarding his position from opportunists and sometimes hurrying to catch up when the line moved. He waved me over to “come down the big slide!” The girl in front of him spoke to me when I showed up: “Why is he wearing those?”

“Why don’t you ask him?” I redirected.

She took a breath and looked in his eyes. He was just a boy wearing headphones. “Why are you wearing those?” she asked him.

He pointed to his shirt, eyebrows lifted. She shook her head, giggling. “The headphones!” she said. “Why are you wearing headphones?”

“It’s noisy,” he replied in a loud voice due to the headphones. “I hear all the noises. And now I don’t.”

I never knew he heard all of them. Maybe he couldn’t concentrate enough to tell us.

The girl nodded, “Wow, you’re like a superhero!”

He, of course, enthusiastically agreed. They went down the slide together. My boy took this very seriously and made her wait while he counted to three. They whooshed down the slide and then he’s gone, disappearing into a field of primary colors and giant balloons. He’s busy.

He has superhero things to do.

Follow this journey on Playing With Fireworks.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

5k
5k
TOPICS
JOIN THE CONVERSATION

Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

427
427

My son is brave.

He took a shower tonight.

A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower.

He’s 8.

Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited.

The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what?

Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feel
like “stingers” piercing his skin. He’s never been able to get near it until today. Baths only.

As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet.

All this changed tonight.

I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families.

He wants the world to know he “is just like” his big brother.

He wants other autistic kids, like him (because there is a huge spectrum), to know
they can do it too. When and if they are ready, “they can be brave too.”

He wants them to know he “did it!”

He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does.

Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!”

Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed.

So you see, my son is brave.

He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage.

I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this.

A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

427
427
JOIN THE CONVERSATION

The Question I Kept Asking Myself After My Son’s Autism Diagnosis

124
124

On August 2, 2012, my oldest son, Trenton, received the diagnosis of autism. I will never forget how I felt the moment I heard the words out of the doctor’s mouth. Dizziness and lightheadedness consumed my body seconds after hearing the words. At one point, I thought I was going to pass out.

I did a lot of thinking on our way home from the doctor that day. The majority of my thoughts were fear of the unknown. Nonetheless, one thing I kept saying to myself that day was, “How could we move past this life-changing diagnosis?”

Mother with children
Angela with her sons.

I spent a lot of time that day and the days to follow asking myself that. I began to ask myself those questions even more as time went on. Our lives were soon consumed with therapy five days a week. I was sleep-deprived and mentally exhausted, and our family faced new challenges in our lives daily.

The life we had before autism was gone.

However, what I did learn over time was that we could get past it, and we could have an amazing life. It’s just a different kind of amazing that we didn’t dream about until our son’s autism diagnosis.

It’s simply closing one chapter in our lives and starting another one. It’s closing the chapter of old dreams and old goals and making new ones.

Sure, it took awhile to get used to. There are days when I just wish we could do some of the things I dreamed about while I was pregnant with Trenton. However, as we all know, life doesn’t go the way we plan most of the time. It doesn’t mean you can’t get past your old dreams; you just have to start dreaming up new dreams that are suitable for your family.

If I could pass on any bit of advice to newly diagnosed families, it would be to stay positive. Focus on the positives that happen each day. As challenging as each day can be, there is something to focus on that is positive. Once you focus on the positives, you’ll be amazed at how you can look at your new life with an open eye and see the beauty that lies within it. You will soon realize your life isn’t over — it’s just the beginning.

Along with the positives, find other families who are similar to yours. I wouldn’t be where I am today without the support from my fellow moms and dads of children with autism. The comfort of knowing that others truly understand you and your life is a positive within itself. You won’t feel alone or isolated. You’ll can be part of a new community and have a new beginning in your life.

When I think back to August 2012 and the two years that followed that day, it was the most difficult time in my life. I was too focused on the thought of never being able to move past the diagnosis and the life I expected to happen. Nonetheless, when I accepted our life, it was just the beginning of an amazing new journey that I believe God gave me and my boys.

Follow this journey on Two Brothers, One Journey and on Facebook.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind 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. Check out our Submit a Story page for more about our submission guidelines.

124
124
TOPICS
JOIN THE CONVERSATION

The Dr. Seuss Quote My Teen With Autism Isn’t Ready to Get Behind Just Yet

235
235

ryan smiling I love Dr. Seuss! I mean, who doesn’t? Who else but Dr. Seuss gets kids to Read Across America for a day in March or eat green eggs and ham? I can’t get my kids to eat food that is suppose to be green, let alone food dyed green that looks like something pulled from the dark recesses of the refrigerator.

This guy wasn’t a doctor; he was a wizard. Not only could Dr. Seuss rhyme better than Jay Z, he taught amazing life lessons to kids through funny, fabulous, memorable stories. No wonder he gets a National Read Across America Day for his birthday and Jay Z doesn’t. Sorry, Jay Z, I’m sure you can cuddle up with your millions to make you feel better.

One of my favorite quotes from Dr. Suess was prominently displayed on our pediatrician’s wall when the kids were little and I loved it. “Why fit in when you were born to stand out!” So true, right? Don’t we all want to stand out? Be someone unique, original, different? No. Not if you are a middle school teen. The last thing you want is to “stand out.” You want to blend in, be part of the crowd, look like all the other bewildered middle schoolers… until one day, you don’t.

My son Ryan just told me last week after a day of homework hell, that he doesn’t like to ask for help because he feels like “everyone is looking at me because I am different.” It broke my heart. We talked about how being different is cool. We talked about how everyone is different, autism or no autism, and how boring the world would be if everyone were the same, but, I knew it wasn’t resonating with him.

So, as amazing as Dr. Seuss was, as amazing as his rhyming still is, and as much as I still love this quote, it is not so true for the early teen years, especially if being “born to stand out” comes as a result of an autism diagnosis. So, if Dr. Seuss were still alive today, I would either text, tweet or IM him my rhyme for middle school-aged kids with autism, and maybe we could sit down and enjoy some green eggs and ham while we discussed it (yeah, not a chance, not even for a signed first edition of “The Cat in the Hat”).

My bust-a-rhyme rap would go something like this…

Sorry old doc, but this quote is a bust
when you are in middle school fitting in is a must.

With big body changes and feelings galore
it’s no fun to stand out when you feel so unsure.

One day being different will make him feel proud,
but, right now as a teen he wants in with the crowd.

He knows he is “different” that much is true,
but, some days being different makes him feel blue.

Being “same” may be boring and not how he was born
and being proud of his differences makes him feel torn.

The right pants, shirts and shoes are what makes these kids cool,
but, some days his body wants comfort in school.

When kids walk the halls laughing and fitting in
he can’t help but wonder, “How did they begin?”

He knows that his autism does not make him “less,”
but, sometimes feeling “more” would be sure fun to test.

In chorus when he sings notes from his heart
he knows that his differences stand him apart.

But in the halls and the lunch room where kids tend to gather
he feels like an outsider where his heart doesn’t matter.

When he comes home to a place where he knows that he fits
the big parts of the day slip away to just bits.

One day I know he will be proud to stand out
and I will be by his side when he stands up and shouts:

“I may not know what it is to be cool,
but, one day when I am long gone from this school
I will find a place where I belong
and prove to all others that labels are wrong.”

“Different, not less” is how the quote goes
and no one knows that better than those
who wear labels to school and beyond
but one day the labels for all will be gone.

The “cool,” the “hip,” the “out,” the “in”
the labels all change from where we begin.
Being different will no longer cause him to pout
one day I know he will proudly stand out.

The label “autism” is only part of who you see
the only label he wants is the word “me.”

“I am me, me I am
and for the times I don’t understand 
I look to those who only see me 
and not some label from a degree.”

“See me not the label!” 
he is trying to shout.
And when one day you do
he will proudly stand out.

I have no doubt that one day, when the doors of middle school close behind him, Ryan will fully appreciate his unique and fascinating mind, and understand that underneath the same cool clothes “everyone is wearing,” we are all different. Until then though, I believe he will continue to try and fit in, while embracing what makes him stand out.

I’m sure Dr. Seuss would suggest I stick to blogging not rhyming; we can’t all get a National Holiday to recognize our birth (sorry, Jay Z). Regardless of what Dr. Seuss would have thought of my mad rhyming skills, I still wouldn’t eat green eggs and ham with him. Nope. Not a chance. Not in a box. Not with a fox. Not on a boat. Not with a goat.

Follow this journey on The Awenesty of Autism.

The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.

235
235
TOPICS
,
JOIN THE CONVERSATION

What I Missed During My School Years as a Person on the Autism Spectrum

94
94

I was diagnosed with Asperger’s in my early 30s. In my previous blog, I shared what it was like for me to be different in my earliest years. I would like to go further now and talk about how I felt during my school years.

Kindergarten through second grade were a blur. A fast-moving period of time when I went to school timidly, did well scholastically and arrived home breathlessly happy to be able to play with my close friends.

When I was in third grade, my family moved. I had trouble making new friends. The few sleepovers I attended were confusing and uncomfortable for me. A group of little girls I hardly knew, giggling and talking to each other about things only they seemed to understand. I felt so different from them, like an outsider looking in. I began to read a lot, mostly “Nancy Drew” books, and take long walks in the woods with my dog. My mother let me have my childhood friends over, and that made me so happy.

In fifth grade, I moved again. I didn’t even try to make friends. I was quiet in school, tried to blend into the classroom and be invisible. I sat alone in the cafeteria, played alone at home with my Barbies and read my beloved books.

And then my parents divorced, and another move came. Back to where I started.  In the same apartment complex I grew up. Where my good friends still lived. I was glad to be with them again, and we were wild kids in the evenings, played outside until dark each night.

But the days were hard. Because I was in middle school. And middle school was hell for me. I learned quickly that oral reports were near impossible for me, and I ended up refusing to do them by eighth grade. I flat out refused, red-faced in front of the whole class and the mystified, slightly miffed teachers. My grades were good, I was in all honors classes, but I willingly accepted a zero grade for each oral report I skipped. Gym class was a nightmare as well, a place where kids got picked for teams by their friends (I had none, as my dear friends were in different grades from me, so I got picked last, by kids who openly showed their displeasure at having to pick me). Gym class was also a place where I didn’t perform well, where I ducked at baseballs I was supposed to catch, dodged soccer balls, and basketballs passed my way. I was clumsy and afraid of climbing ropes, and I couldn’t hit a volleyball over the net. The other kids scolded me and scorned me for my efforts or lack of. I came up with every excuse in the book to not attend gym. When I had to, when the teachers made me, I hated every minute of it, and at the end of each class, I walked away full of self-loathing.

We moved again, and my first two years of high school were spent in another state, far from my childhood friends. High school was totally different for me. I found a group of kids I could fit into. They weren’t clicky or popular or athletic. They didn’t care that I was different. And they didn’t converse much about anything, which was great for me, as I generally sucked at following conversations.

They were potheads. And to hang out with them, I had to be one too. So I became one of them. My grades fell quickly. I started to smoke cigarettes. My mother didn’t know what to do about my new don’t-care attitude, but I ignored her. I finally found a place where I fit in. With the misfits. And I was in all my sensory glory, cozy in my new sedated world. As wrong as it all was, I was happy again.

I was later hospitalized for depression, although I certainly didn’t feel depressed. The hospital was depressing for sure. Strange foods I wouldn’t eat, strange people and kids who talked about feelings, and of course, strange medications, which made me feel numb and like a nobody.

I moved again, this time to live with my father. A new high school in my home state. I flat out ignored the other kids in school. I barely passed my classes. I read my books, did my homework and just lived. After some time it all became so unbearable, I dropped out. I was three months shy of graduation. I never went to a concert or a prom or a high school party. Never even wanted to. And I have no regrets about that.

My children sometimes ask me why I didn’t go to college. I always change the subject, redirect them to something easier to talk about. How could I possibly explain all of this to my sweet little ones? The dread I felt each morning before going to a school where I didn’t fit in, the ridicule I faced during my gym classes, the utter boredom of being forced to learn what I did not want to learn, the self-hate I felt as I walked eyes down through a sea of students in a hallway. Not to mention the noise of it all. Echoes of laughing and chatting and yelling in the cafeteria and hallways, slams of lockers and feet stomping by. All those strange faces and eyes that would surround me in school, looking at me, seeing me as different. Oh no, I cannot explain that to them. Not yet. But as my children grow older, wiser and more able to understand these things, I will tell them.

They are both on the spectrum, you see. I homeschool one so she won’t have to know the social difficulties I knew. She loves animals, horses particularly, and I plan to follow through with that interest in hopes of her following a different path than the one I took. A healthier, more self-loving path where she can bond with others her age who share her interests. And for my son, who attends a brick and mortar school, I hope to do the same. Find his interest and allow him to flourish with it.

Thinking back, that’s what I missed. The opportunity to be myself in a setting I flourished in. But I cannot fault my parents, as I still have not found that setting. Perhaps it is in parenting and advocating for my children that I find myself at home and at peace.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them?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.

94
94
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.