What My Son With Autism Taught Me After His Chorale Performance

223
223
4

I see their looks. I see their stares. I see their smiles bordering on a smirk. I see their patronizing high-fives. Sometimes, I wish I had a blindfold.

I hear their voices. I hear their silence. I hear the way they speak to him as if he were a young child. Sometimes, I wish I had ear plugs.

I feel my sadness. I feel my anger. I feel the ache deep in my heart. Sometimes, I wish I had no heart.

These feelings often sweep over me and settle on my chest, directly over my heart to the point of suffocation. But then the feelings go as quickly as they came, leaving me to breathe easy once again. These moments and these feelings are few and far between, but when they come, they leave a scab that I tend to pick at for days until eventually the scab heals with just a small scar visible only to me.

Kathy Hooven the mighty.3-001

It was a hot summer day in a church built in 1825, which meant no Wi-Fi and no air conditioning. A group of teenagers gathered at the front of the church, sitting among the pews, giggling, chatting and warming up their voices. At the end of the pew, against the wall, sitting alone and seemingly unaware of the buzzing activity surrounding him, sat my son, Ryan. Ryan sat quietly looking over his music and preparing for the day’s performance while I almost vibrated out of the pew. His sensory system, which is often so heightened, seemed unaware of all the buzzing activity going on around him. In fact, for a change, it was not my son’s sensory system on edge, it was mine.

It wasn’t Ryan who wanted to bolt out that old church door to escape the feelings that overwhelmed him, it was me. As I sat in the church, with little to no air moving, my chest felt heavy. I wanted to run out of the room with my old friends, Denial and Clueless, who had slid in next to me on the pew when I wasn’t looking, to escape what my brain and my heart were feeling. I had been so consumed with my watching, waiting and worrying for what had always been, there may have been a few moments that I missed what really was.

As parents continued to arrive and the temperature of the church continued to rise, I felt my heart beating in my chest and a trickle of sweat began forming on my brow. I watched, waited and hoped with anticipation. Would one kid talk to him? Would one kid see him? Would he talk to one kid? Would he see one kid? After all, he just spent a week with these kids at chorale camp so it was reasonable for me to get my hopes up, right? Nothing. Not even a nod, a hello or an acknowledgement on either side of the pew. And although my heart was pounding and my sensory system felt like it was on overdrive, Ryan looked happy, content and fine. As always, it was my problem, not his.

Kathy Hooven the mighty.2-001

But once the performance began, my son stood shoulder to shoulder with the rest of the chorale ensemble in front of the church. He blended in with the others. He didn’t stand alone, he didn’t appear “different.” There was no aloof stance, there was no awkward smile. There was just the music and his voice. Suddenly, I felt my heartbeat slow down and the church no longer felt so stifling.

Within the first few notes, the tears began to fall. Not his, mine. He immediately looked my way, seeing no one but me, and once he saw my smile, once he saw my tears of pride, his smile and his tears matched my own. You see, we have sat in many rooms together, the two of us, where no one saw him like I did. Where no one heard him like I did. Where no one felt him like I did. However, on this day, when his beautiful voice bounced off those church walls, I believe they all saw him, heard him and felt him as I always have. I had waited for that moment for a long, long time. Funny thing is, I don’t think Ryan has.

As he finished his song, there were smiles, there were high-fives and there were “good jobs.” Even after all that, a part of me still worried that their smiles, their high-fives and their “good jobs” may not have been sincere, that they may have been a bit patronizing because they saw “different.” But when I watched my boy take his bow then fight back his own tears of pride, I realized what matters most to Ryan is how sees, how he hears and how he feels about himself. Ryan spends little time concerning himself with how others perceive him. It’s a lesson we could all learn from him.

Had I worn my blindfold, had I brought my ear plugs, had I removed my heart, I wouldn’t have seen him, heard him or felt him, and there is no worry great enough and no pain deep enough worth missing that. As for their smiles, their high-fives and their “good jobs,” they may not have been insincere or patronizing, but, even if they were, I need to take a lesson from my son and recognize who and what really matters.

Once again, Ryan showed me it’s my problem, not his, and it’s a problem I believe he has already solved.

Follow this journey on The AWEnesty of Autism.

223
223
4

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When ‘Free and Appropriate Education’ Didn’t Apply to My Son With Special Needs

22
22
6

For the last few years, professionals have been telling me my son is “complex.” I get it. The mixture of brain damage caused by fetal alcohol spectrum disorder and bipolar disorder confuses me, too. But when there hasn’t been progress in the four years he’s been in public school, I have to start questioning them.

According to national law, every child in special education is entitled what’s called a “free and appropriate education.” To me, this law is vague and open to interpretation. How do you determine, in black and white, what is appropriate? Does it go by the educator’s opinion or the parents’?

My son is going into fourth grade and he can’t read. Like, at all. Like, he’s still in pre-K for reading skills. The school tells me it’s where he is developmentally. But having some of the same goals as he did in Kindergarten doesn’t seem very “appropriate” to me.

So, like most concerned parents, I started digging deeper. Let me be clear. I support teachers and staff. I know they work hard and they love kids. I don’t blame them for my son slipping through the cracks. They are bound by flaws in a larger system.

When I started to question my son’s lack of progress, I was shown “proof” in the form of work he’d created. At first glance, it was impressive. The 9-year-old who couldn’t even identify all his letters at home had apparently written a whole sentence at school by himself.

Thank God for my detail-oriented husband who looked closer. There were four words. I can’t remember what they were so I’m going to make something up as an example:

“I see a crab.”

My husband asked, “So he knew how to spell the word ‘see’?”

The teacher averted her gaze. “Well, no. We helped him with that one.”

I looked at the top of the paper and realized the vocabulary word for the day was “crab” and there it was spelled out right on the page. So his teacher helped him write “see” and he copied the word “crab.” So the words he’d written in that sentence were “I” and “A.”

He’d spelled two one-letter words by himself. And I’m supposed to be impressed by this? This is their idea of progress?

The huge lack of academic progress was one problem. The other was his behavior. They “managed” him at school, which basically meant they tiptoed around him so he didn’t explode. The public school isn’t equipped to handle kids with behavioral issues. When he did have meltdowns, they called me to pick him up. I grew tired of this after the first couple times and told them if they couldn’t handle him, they’d have to find a school that could. I didn’t hear a peep after that.

Concerned our child was heading down the path to illiteracy, and potentially prison, we called an attorney. She took one look at his file and said, “What the heck have they been doing?”

The fact that he’d been physically restrained six times at school and there’d been no FBA (functional behavior analysis) or BCBA (Board Certified Behavior Analyst) involvement was a huge oversight. The attorney said he needed comprehensive evaluations done so we’d know his potential and the best way to teach him.

So the monthly Planning and Placement Team meetings started, and we tried to figure out the best school programming. We pushed for outside independent evaluations, pushed for a better summer program and eventually pushed for outplacement to a specialized school that could handle his behavior and severe learning disabilities.

As you can guess, lawyers are expensive. First I drained my savings account. Then I had to borrow money from family. And now we’re looking at getting a bank loan.

So where is this “free and appropriate education” I’m promised? It cost me $10,000 just to get the evaluations we need to understand how he learns and an adequate summer program. How is that free?

I’m angry.

I’m angry I can’t afford a family vacation this summer, that we had to cancel Friday pizza night and that my husband and I can’t even go on a date. And all for the very basic things my son needs to learn. All for him to know the difference between a consonant and a vowel.

If we didn’t look closely at his education program, he would’ve gone on like this, unable to read, not getting his sensory needs met, barely skating by in public school.

He deserves better. And according to the law, I shouldn’t have to pay thousands of dollars for the bare minimum.

And what about all the kids in the special education system whose families can’t afford a lawyer? We’re middle class and we can’t even afford it. We’re willing to go into debt for it, but what about those who can’t?”

It’s not fair the most vulnerable members of society are the ones who are overlooked, slip through the cracks, require court battles and legal fees to get their fair share of education. Where’s the equality now?

I guess “free and appropriate education” doesn’t apply to my son.

Follow this journey on A Phoenix From the Ashes.

The Mighty is asking for mental health related back-to-school pieces. Parents: do you have advice or a story about navigating the school system with a son or daughter with a mental illness? Students: Do you have a back-to-school story or tips for maintaining your mental health while in school? 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.

22
22
6
TOPICS
JOIN THE CONVERSATION

Girl With Orioles-Themed Prosthetic Hand Has Baseball Wish Fulfilled

147
147
0

Hailey Dawson is a huge fan of the Baltimore Orioles.

The 5-year-old got to throw out the first pitch at the Orioles vs. Athletics game Monday, August 17, using her Orioles-themed 3D-printed prosthetic hand, ABC News reported. She tossed the ball across home plate to her favorite player, All-Star Manny Machado, in Camden Yards stadium as the crowd went wild.

Screen Shot 2015-08-19 at 8.57.56 AM
Via haileys_hand on Instagram

Hailey has a rare congenital condition called Poland syndrome which has resulted in her right hand and pectoral muscle not being fully developed. She uses a prosthetic device created by the engineering department of the University of Nevada Los Vegas (UNLV) to help her grip and hold things, according to the Major League Baseball website. Hailey had her prosthetic done in orange for the Orioles and added the team’s logo as well.

Screen Shot 2015-08-19 at 8.58.34 AM
Via haileys_hand on Instagram

Hailey’s chance to throw out the first pitch was more than fulfillment of a wish for the child, it was also an opportunity to raise awareness about affordable prosthetic devices.

Ultimately, the goal is not just to have her dream come true, but to expose the hand and that people can get this hand. And it’s available to anybody,” Hailey’s mom, Yong Dawson, told MLB.com. “It’s so easy, so cheap — especially for someone who is a kid, their arms are growing, their hands are growing… I just wanted it to be out there, that, ‘Hey, you can get this.'”

Watch Hailey’s pitch in the video below: 

147
147
0
JOIN THE CONVERSATION

When Your Child With Special Needs Doesn’t Receive Any Invitations

5k
5k
7

The summer is almost over in Massachusetts, and the kids will go back to school in a few weeks. In many areas of the country, they have headed back already.

As much as I don’t look forward to returning to the rigorous school routine, there is a relief in knowing that the summer is coming to a close. I have three boys, and our weeks have been filled with getting them to different places with their friends. They have received invitations to sleep over, invitations to ball games, invitations to the beach, invitations to go fishing and invitations to the movies. That is, except for my middle son, Davis, who didn’t receive any invitations this summer.

I never get the opportunity to say to Davis, “It’s for you.” I would give anything to be able to say to him, “This text is for you. You’ve been invited to the movies.” Or “This phone call is for you. You’ve been invited to your friend’s house.” Or “This invitation that we received in the mail for a birthday party — it’s for you.” And as heartbroken as I am that I never get to say these words to him, I’m even more saddened when he asks me who he’s going to play with. The answer is I don’t know. At 12, he no longer wants to play with his mom.

I believe this is the most difficult part of having a child with special needs. The medical issues, the extra financial cost, navigating the school system and the longterm concerns are significant, but the real weight comes from this: The lonely summer days, knowing you have this wonderful human being as a child, whose entire summer could be changed by a single invitation, and realizing that the invitation may never arrive. Knowing your wonderful child deserves the social invitation that is easily extended to others, but that won’t be extended to him, unless you intervene.

So I will accept that responsibility. I will make the phone call next week, and I will send the text. I know a lot of children with special needs who would be happy to accept the invitation I can extend. And I will ask all of the wonderful volunteers who are so available throughout the school year to remember us next summer, to step outside of the organized programs and know that we would love to see them across the break.

If I’ve learned anything from being Davis’s mother, it’s that things may not always play out as I wish they would, but we’ve landed in a pretty amazing community, and there’s no need to go it alone.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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.

5k
5k
7
TOPICS
JOIN THE CONVERSATION

When the Outside World Whispers About Your Special Needs Family

909
909
0

It never fails that when we go out as a family, we get a lot of attention — not because we’re celebrities, but because we’re a family with children who have special needs. With special needs being a part of our family routine, often enough, we’re the ones who turn heads — not because we want to, but because we have a dynamic that the rest of the world isn’t used to.

On the outside we’ve learned to get used to the looks of sympathy and the whispers. We’re even getting good at coming up with some pretty snappy comebacks to those who feel we need a talking to about our awesome and spectacular parenting skills. But what happens to us on the inside? A lot of parents like us are hurting inside. We are reeling from the cruelty of the outside world. All those hurtful comments and whispers pile up. Those stares and looks are ingrained in our brains and at the end of the day when we have five minutes to ourselves, everything comes back to haunt us. As much as we try to educate those who are willing to learn and those who aren’t, we still can’t shake off the perception that the outside world has of our family.

A lot of us just want to scream about how it isn’t fair to be judged so mercilessly, and that we wish that all those who judge could just for once learn what it means to walk in our shoes. It would mean tapping into what makes them a decent human being. Opening up their hearts and minds to something different from their norm. Sleepless nights because of worrying or a loved one who doesn’t sleep. Trying to do daily errands like grocery shopping while managing a person who needs a little extra time. They would have to go on outings to restaurants and parks and deal with people staring as their loved one attempts to fit in with the rest of the world, all while having no control over their own body. They would have to go to doctor appointments, sit there and listen to the doctor tell them not so great news about the person they love, try to get home and process everything. They would have to argue with a school administration that their loved one has potential but just learns differently. The sad part is, this not even remotely half of what it means to be part of “that family.”

For caregivers like us, it weighs heavily on our hearts and minds when we deal with everything society throws at us. There isn’t a person on this planet who wants to be subjected to ridicule on any kind of level. It hurts us inside when society can’t accept difference and diversity, when it’s pointed out how different our family is compared to yours.

For most of us it doesn’t matter how much we promote and educate what’s dear to our heart; we will always be “that family.” People are always going to comment and or stare. We will always have that sympathetic vibe following us. But in reality, we don’t need sympathy or the “God will only give you what you can handle” talk. In reality, what we want is not to be “that family.” We want to be accepted like every other family — a family that loves each other.

I know there are people who are kind and respectful when it comes to special needs. Wading through the comments and stares, we find those decent human beings. They take the hurt out of our hearts. They remind us that not everyone is judgmental.

So I guess if we’re going to be “that family” — the ones who love each other, the ones who show the world we accept each other for who we are regardless of differences, the ones who operate as a family unit in the best way we know how — then so be it. At the end of the day, when it’s quiet, we can lament on what it means to take what life throws at us and handle it the best way we know how. We know it isn’t going to be easy; life isn’t easy. It’s hard work, but at least we have each other to get through the toughest of times. And that’s what it means to be part of “that family.”

Follow this journey on Andrea’s personal blog.

909
909
0
TOPICS
JOIN THE CONVERSATION

How a Barber Gave My Son With Autism His First Great Barber Shop Visit

183
183
0

My son, Dominic, has been to a barber shop exactly twice. The first time, my husband and I took him to the local Meijer barber shop and he gagged and cried so much, we had to leave. The second time, he bolted out of the barber shop and almost ran into the road. I’ve been cutting his hair ever since. I would have to get myself mentally “geared up” to give him his haircuts, because it would be so upsetting for the both of us. When he was small enough, I could put him in his booster seat, strap him in and cut away. Given that he is now over 120 pounds, those days are long gone.

This past Saturday, Dominic out of the blue started saying, “Haircut, barber shop, socks and shoes, car.” He probably repeated it at least half a dozen times. Every time he would say it, my response back was, “Are you sure?” I tried to explain to him that once the barber started, he would have to finish. He was extremely persistent about wanting to go. He wore me down until I finally said, “OK, fine, let’s go to the barber shop.” We actually went back to the second barber shop we had tried about nine years ago. I parked the car behind the barber shop and we walked around to the entrance. I looked inside and there was at least eight people sitting there. I told Dominic, “OK, they are way too busy. We are going to have to come back another time.”

I turned around and we started walking back toward our car. As we went past the side door of the barber shop, one of the barbers came out and approached us. I explained to him that Dominic has autism and that he had been requesting a haircut all morning. I told him, “We can just come back another time, you look really busy.” The barber then said, “Come back in, most of the people are waiting for a certain barber to cut their hair.” We came back in and Dominic and I sat down. It was quite warm in the barber shop and the longer we waited, the more anxious and sweaty I got.

I was really getting concerned because of all the noise inside the barber shop and the fact that we would have to wait. Dominic was playing with his Nintendo DS that he recently got for his birthday and he was “chill.” I was the one who was a nervous wreck! After about 15 minutes, the barber said, “Dominic, are you ready?” We both walked over to the chair and he started using scissors on his hair. I said, “Let’s try an electric pair if they aren’t too loud.”

The barber took the extra time to explain everything to Dominic during the entire haircut and Dominic trusted him 100 percent. He said things like, “OK, Dominic, now I’ll get the fuzzies around your ears.” He constantly reassured him. Dominic, like most kids, whether they have special needs or not, like predictability. I think the constant reassurance was key for him. I found out after the haircut that the barber had previous experience with children with special needs. As the barber rang us up at the register, I pulled out an extra $5 for a tip. I really wish I had more $1 bills on me! He did such a great job, don’t you think? I think the smile on Dominic’s face says it all.

I’ve had so many people tell me that Dominic’s thick hair is his “trademark.” Most people don’t realize I’ve always wanted him to have short hair, but since I’ve been cutting it and he would only sit still for a short amount of time, that has been impossible.

On the way out of the shop, the barber handed me his card. I tucked it away into my purse and didn’t pull it out again until a few days ago. The barber who cut Dominic’s hair is the owner! Awesome. We certainly won’t wait another nine years to come back.

Follow this journey on Bountiful Plate.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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.

183
183
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.