Halloween Is Hard for My Son With Autism, but We Still Celebrate It

914
914
0

Our son loves the idea of Halloween. He loves the decorations and all the gross Halloween bugs on the store shelves. He likes the idea of trick-or-treating and the idea of dressing up.

But it’s hard for him. Due to his autism and sensory issues, we realized early on that costumes made him unhappy and uncomfortable. From a lion to the Hulk, nothing ever seemed to work for him. I started choosing costumes that only needed a hat and lightweight outfits that felt just like clothes. And overall, that has gone well. Except now he wants to choose his costumes, and crocodiles and dinosaurs are usually fuzzy, heavy and have cumbersome headpieces. So we try to make adjustments (like cutting off the chin straps and the feet). But I’m still not quite sure how it’s going to go this year.

I’m assuming trick-or-treating will appear less than successful, too. In the past, he’s made it to one or two houses and then gets upset that we’re not going into the houses. It doesn’t make sense to him that we would walk up to a house and then walk away without going in. This year, we’re prepping with social stories and practice runs and hoping for the best.

I know some will say, “Why do you celebrate Halloween at all if it’s too much for him?” And I get it. It may appear as though we’re trying to force a societal norm and we should just accept that Halloween will always be different for him.

But he still wants to join in on the celebration. He still wants to wear a costume. He still wants to trick-or-treat with his siblings. Just because something is challenging for someone with autism doesn’t mean they don’t want to participate. It may just take a little more planning and consideration to make it happen. So we accept his boundaries and try our best to accommodate.

And until he no longer wants to try these things, we’ll keep doing them even if it looks like a complete fail to everyone else. Maybe this year he’ll walk up to three or four houses before he starts getting upset and needs to go home. That’s one more house than last year, and we’ll be proud that he gave it another try.

We’ve learned to be grateful for the small steps forward because we know those small steps take colossal effort.

Follow this journey on From the Bowels of Motherhood and on Facebook.

914
914
0
TOPICS
JOIN THE CONVERSATION

Photos Give Glimpse of How Someone With Autism May See the World

2k
2k
1

A new study offers a glimpse of the world through the eyes of a person with autism and reminds us of the beauty of diverse perspectives.

Researchers from the California Institute of Technology (Caltech) used images and eye-tracking technology to investigate how visual input is interpreted in the brain of someone with autism.

The work, detailed in a study published in the Oct. 22 issue of the journal “Neuron,” examined the validity of the belief that those with ASD often miss facial cues, which contributes to their difficulty interacting in social situations, according to the Caltech website.

A team of researchers showed 700 images to 39 subjects. Twenty of the subjects were “high-functioning” individuals with ASD, and 19 were control, or “neurotypical.” Each subject viewed an image for three seconds while an eye-tracking device recorded their attention patterns on different parts of the pictures.

In the images below, the left side (labelled “B”) shows the focus patten of a person with autism, and the right is the control group.

RA-FigB
Left side: group with autism. Right side: control group.

“Among other findings, our work shows that the story is not as simple as saying ‘people with ASD don’t look normally at faces.’ They don’t look at most things in a typical way,” Ralph Adolphs, Professor of Psychology and Neuroscience and professor of biology, said on the Caltech website “Indeed, the researchers found that people with ASD attend more to nonsocial images, to simple edges and patterns in those images, than to the faces of people.”

RA-FigD
Left side: group with autism. Right side: control group.

The new study showed that individuals with ASD were less drawn to faces than control subjects were, but also that they they were strongly attracted to the center of images, regardless of what was there.

For example, in the image below, showing two people talking with one facing the camera and the other facing away, control subjects concentrated on the visible face, whereas ASD subjects attended equally to the face and the back of the other person’s head.

RA-FigH
Left side: group with autism. Right side: control group.

Caltech hopes this research may eventually may help doctors diagnose the various forms of the disorder.

“Looking around the natural world, we all can see that diversity is the norm,” Rose Jochum, director of internal initiatives for Autism Society, told The Mighty in an email. “The world was created so that every single snowflake is unique, so, of course, every single one of us, ‘neurodiverse’ or ‘neurotypical,’ is unique as well.”

h/t HuffPost Science

2k
2k
1
TOPICS
JOIN THE CONVERSATION

The Kind of Hug That Makes Me Sad as a Person With Cerebral Palsy

199
199
5

I am 29 years old and have cerebral palsy. It’s obvious I look and move differently than others, and for most, this is all they see. Because of my physical differences, many people feel sorry for me so they hug me, or they hug me because they don’t know what to say. I know this is just human nature, but I really wish more people would take the time to get to know the person behind the cerebral palsy. They would learn I am a strong, positive person who simply wants what everyone else does: to be cared for because of who I am on the inside, not out of sympathy for my appearance on the outside.

Don’t get me wrong. I’m not a silly fool who turns down hugs from women (it’s mostly women who hug me), but, after all these years, I know when it’s real or fake. Sometimes it isn’t even about me. Some do it to make themselves feel better by acknowledging someone who they think needs sympathy or else they might feel guilty ignoring me because of my challenges.

Dustin Estabrook.2-001

The truth of the matter is I am more challenged than the average person. Over the years, I had a ton of operations, been in a wheelchair, used a walker, been bullied and have often been excluded. I’ve had to persevere and overcome a lot. I’ve had to learn how to do many things most people take for granted. Every day brings new challenges, and I am grateful for all of them. They made me the strong person I am today. The last thing I want is pity.

As a person who is so much more than cerebral palsy, sympathy hugs make me sad. They don’t bother me as much as they used to, but they remind me that a lot of people still only see my disorder and not the depth I have as a thinking person with feelings. I don’t need this reminder. I live it every day. What I need to know is that I am a valued person beyond cerebral palsy…and I am. I am smart, funny, caring, thoughtful, patient, understanding…it’s a long list of qualities. Sometimes it seems that no matter how much better I get every day, physically and mentally, many people still see me as someone to feel sorry for.

Every day I work my tail off to be the best person I can be. The people who see this person are the ones who give me a genuine hello and goodbye hug; the hug that really makes an impact on me because it shows me that I matter to them. They see past the cerebral palsy and embrace me as a fully functioning, worthy person.

You can’t put a price on genuine interest and care like this. I give it to everyone I meet so when I get it in return, it makes my heart sing. The people who hug me with their words as well as their arms see all of me, not just cerebral palsy. Genuine people who treat me as an equal are the gold nuggets in my life!

199
199
5
JOIN THE CONVERSATION

The Moment That Made Me Stop Pushing My Child With Autism to Make Friends

1k
1k
9

Our daughter, A., has received special education services — friendship classes, occupational therapy, speech therapy, social skills therapy and adaptive PE, etc. — since kindergarten. But even with all of that work, it seemed our daughter simply didn’t have friends at school. The neighborhood kids would play with her, and her little sister was a devoted playmate, but no friends at school.

Then we were faced with the transition to middle school — three years I feared more than any other. I remember how hard it was for me, a shy girl whose best friend moved away right before junior high. How awful was it going to be for my daughter, who has a nonverbal learning disability? She just didn’t understand all of the subtle body language others use every day.

We always have our IEP meetings at the end of the school year to plan for the coming year. I will never forget when her autism teacher announced at the end of 7th grade, “A. doesn’t need help with social skills anymore. She has them, she just refuses to use them.”

Wait, what?

This was a turning point for us as parents.

Until that moment, we pushed her to make friends, talk to people, get involved, etc. I can’t speak for my husband, but I had constant visions of her being bullied by mean girls and struggling each day. I didn’t want her to get depressed or no longer enjoy learning.

At that moment, I realized she might be happy the way she was.

That evening, instead of opening the conversation with, “Did you make any friends today?” I asked her, “Are you happy?”

She quickly responded that yes, she was happy.

I pushed a little harder.

“No honey, I mean are you really happy with your life, even though you don’t have many friends?”

“Mom, I’m fine.”

After that, we stopped pushing her on making friends. It’s more important to us that she’s happy with who she is than that she fulfills some abstract checklist we have in our head of what she “should” be doing and what she “should” be enjoying.

As it turns out, she actually was making friends; she just wasn’t telling us. She had the most popular table at lunch time. Not because she was a popular student or one of the cool kids. Her table was popular with all of the kids who didn’t fit in anywhere else. She welcomed them without judgment or ridicule.

She also discovered anime in middle school. It opened up a whole new world for her with people she’d never met before. Because she shared a common interest, she was able to form friendships online and in the real world. She regularly attends anime conventions with a group of friends she met there. The only thing they have in common is love of anime, and yet they call each other to make plans to get together.

This love of anime led her to discover she loves writing, too. She has written hundreds of short fanfiction stories since middle school. She writes in the universe of her favorite shows and has enjoyed a lot of success. The people who read her stories don’t care about her autism or if she has the right hair or the right clothes. They care about when she will post the next segment of her story.

I guess that teacher was partly right. She does have social skills — she just chooses when to use them.

Lead photo source: Thinkstock Images

1k
1k
9
TOPICS
JOIN THE CONVERSATION

When I Thought the Man in Supercuts Was Judging My Special Needs Family

477
477
1

It was while getting my daughter Vivian’s haircut that a total stranger — without a saying a word — let me know he understood I was doing my very best.

Vivian shocked me when she said she wanted to cut her hair short — really short. I was game because while I love her long hair, it’s very thin and there’s a lot of it. Sadly, since I wasn’t planning on anything more than a trim, I didn’t have enough battery power on my cellphone to keep my other daughter, Caroline, entertained throughout this experience. Once the phone died, which happened before Vivian’s haircut even got started, Caroline was all over the place. She tried to leave, she climbed on the shampoo chair, laid on the floor and made a snow angel, played with a hair dryer not in use and tried to use the cellphones of three other people. Girlfriend was relentless.

Kacie.2-001

Vivian, for her part, decided about halfway through the haircut that she looked like a boy and started to regret her decision. So there I was corralling Caroline and offering a pep talk to Vivian. I was trying hard to be the mom both of the ladies needed at the same time, so I had to be two totally different versions of me.

A young man and his son, who was about Caroline’s age, came in for haircuts. They were were in and out before Vivian’s haircut was complete. However, they were there long enough to see the chaos the Buzzard Ladies had brought to Supercuts. At one point I told Vivian, “You need to take it down three notches. Our family is responsible for 90 percent of the noise and 100 percent of the chaos in here.”

When Vivian’s hair was about halfway done, one of the other hairdressers asked if Vivian had received a deep conditioning. I said no because we decided to go with a short cut instead. I thought it was weird she was asking but figured she needed to close out our ticket for some reason.

Later, when they told me my bill had been paid for by the young man, my jaw dropped. I didn’t ask why. I was speechless. I was convinced he had been silently judging me while he and his son waited for their haircuts. And it turned out maybe he was, but not in the way I had imagined.

While we were at Supercuts, I didn’t apologize for Caroline’s behavior or explain she has autism. I was too tired. But between our interactions, the man who paid for Vivian’s haircut could see that despite how disruptive our family was, we really were trying to do the best we could. I thank him for not harshly judging Caroline, Vivian or my parenting. His willingness to look past our loud, active presence allowed him to see that even families who have kids with special needs sometimes need to run errands.

His silent generosity reminded me some parents offer their support to other parents without words but with gentle gestures that say, “I have been there, too. You will make it through this day.”

Thanks for the haircut and the pick-me-up.

Follow this journey on Failure to Thrive or Ability to Overcome?

477
477
1
TOPICS
JOIN THE CONVERSATION

I’m a Little Lost as a Special Needs Parent

428
428
11

It’s been almost two years since my husband and I started our journey as parents to a child with special needs. Back then, we weren’t even using the words “special needs.” We just knew our baby girl was delayed and were hopeful she would “catch up.” Eleven months of blood work, MRIs, EEGs, ERGs, genetic tests and lots of therapy later, our daughter was finally diagnosed with a rare genetic mutation. The good news: We had an answer. She would always be delayed, but she would make progress. The bad news: It posed about a thousand more questions. Questions that, to this day, are still largely unanswered because there are only a handful of others with our daughter’s same mutation.

In my search for answers, I’ve eagerly devoured many articles written by other parents of children with special needs. Usually, I come away from these with a feeling of genuine comfort. But sometimes the doubt creeps in. How do these people have the answers and I don’t? I’m a Virgo. I crave order and organization, and having so many unknowns gives me anxiety. 

Here’s the truth I want to share with you: I want to be the best possible parent to my daughter that I can be, and I don’t know how yet.

And that’s OK. Here’s why.

No one has invented clones or robots yet. There are simply not enough hours in the day to sort out these complicated feelings. My husband and I work full-time and, in addition to our daughter with special needs, we have a very spirited first-grader to raise. Forget about “me” time. Forget about hobbies. It’s work, eat, family time, clean up, more work. On top of that, there is an unending pile of research, paperwork and emails relating to my daughter’s rare genetic disorder. 

Science is hard. Parenting a child with special needs forces you to learn a whole new language overnight. For us, it’s been a crash course in genetics. And if you’re like me and don’t easily understand genetics or complex medical terms, you may find yourself reading the same things over and over again. Every couple of months, I have to re-learn what all the terms surrounding my daughter’s rare genetic mutation mean. 

You never know when the grief is going to hit you. And it’s surprising when it doesn’t. One day, while waiting for my husband and daughter to come down a large slide, a little girl with the exact same brown ringlets as my daughter slid down. For a brief second, my heart caught in my throat as I thought my husband pushed our daughter down this giant slide by herself. The second passed, and I realized she was someone else’s daughter. She ran away, and my husband and daughter slid down. We watched this typical 2-year-old for a moment, marveled at the similarity of her curls and then didn’t give the matter a second thought. 

I’m not sure why coming face to face with the typical version of our daughter didn’t bother us, but a recent barrage of Facebook updates of younger babies surpassing our daughter in milestones have been bumming me out. “It is what it is” has become our go-to mantra.

“Comparison is the thief of joy.” I’ve encountered many parents who seem like they have it all together, or they know about something I’ve never heard of before. I admit it sometimes makes me panic. How can it be there are still things I don’t know when I spend almost every free moment scouring my Facebook groups or networking with other families? I have to remind myself, the people who seem like they have it all together probably have been doing this longer, have had more therapy or maybe I just happened to encounter them on a really good day. 

I’m still fairly new to this journey, and it’s important I cut myself some slack. 

It’s OK if I feel like my daughter’s best advocate one day, and the next day I want to crawl under the covers to hide. 

It’s OK if my to-do list is a mile long, and my house is perpetually messy (that one’s for you, hubby!). 

It’s OK if I don’t know what I’m doing yet.

All that matters is I’m trying, so I’ll get there.

428
428
11
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.