Are We Too Sensitive as Special Needs Parents?

1k
1k

I wonder if I’m too sensitive to people’s remarks, reactions and responses to my son, Caleb. When you’re a parent of a child with special needs, especially a parent of a cute kid with spiky hair in a blue wheelchair, people notice and say things. They stare. Sometimes, often times, they say the absolutely wrong thing. But do they mean to? Are they intentionally trying to be rude? Let’s discuss.

I’m going to share one recent example:

We were at a birthday party at a skating rink. Caleb was free to take his wheelchair on the rink and go as fast as he wanted, do wheelies, spins, etc. People stared; that was nothing new. But one man really seemed to get a kick out of Caleb. He asked Caleb to show off by doing some wheelies. He even called his daughter over to see Caleb performing his tricks. He asked questions like, “How old were you when you started using a wheelchair?” Afterwards, the man looked at my husband, Glenn, and said, “He’s an inspiration to me.” On the way home, Glenn and I started talking about it. My first reaction was to be annoyed. Caleb isn’t a circus act; he doesn’t need to perform tricks for you! And the “he’s an inspiration to me” comment. He’s 10, he’s a kid, he’s not here to be your inspiration.

I could feel myself getting all fired up about this stranger at the skating rink. Then I took a breath. The truth is that the man was really interested in Caleb. He talked to him. He smiled at him. The man had 100 percent good intentions, I have no doubt. And Caleb loves doing wheelies and looks for any opportunity to show off. Caleb loved every second of it. And Caleb is an inspiration to a lot of people. He inspires me.

I’m beginning to wonder if I’ve been too sensitive about these things over the years. Maybe we’ve all been too sensitive. For fun, I did an informal survey on Facebook to see what comments or questions bother other special needs parents. I’m going to share the main issues and then share why I think I (or we) have been too sensitive about each one. I’m also going to share some of the comments I received.

1. “What’s wrong with him/her?”

I know I’ve heard this from so many people over the years. Obviously it sounds like the person asking this question is saying there’s something wrong with our kid, and we take offense to that. I agree it’s a poor choice of words. But a poor choice of words doesn’t mean ill intent.

Here is what I think happens. The person asks, “What’s wrong with him/her?” but what they really mean to say is: “I’m curious why your child is in a wheelchair (or has a different special need). I don’t really know how to ask about your child. I’m nervous and I’m curious. I don’t mean to say the wrong thing… but I don’t know how to ask.” Sometimes, often times, people blurt out the first thing that comes to mind.

2. “Ahhh, bless his/her heart,” “Poor thing” or “I’m so sorry.”

Yep, I’ve heard these many times as well. I don’t want anyone to feel sorry for Caleb. But the truth is that people do feel sorry for him. And honestly I know people feel sorry for me as his mom. I know they do. Before I was on this journey, before I had Caleb, I could totally hear myself saying any of these phrases to someone. Maybe they don’t mean it to sound like pity. Maybe they are trying to be sympathetic but it comes out wrong. Again, people often blurt out the first thing that comes to their minds.

3. “As long as the baby is healthy.”

I’ve heard “as long as the baby is healthy” a hundred times from pregnant women over the years. I think this one bothers me because I hear them saying Caleb isn’t healthy and therefore they wouldn’t want Caleb. But the truth is every pregnant woman on the planet wants a healthy baby. And I think women say “as long as its healthy” because they’re scared. They are wishing and hoping that nothing is wrong and that everything goes perfectly.

4. Not using people first language.

We want our kids to be seen as a person, not a diagnosis. Caleb has spina bifida, he isn’t the spina bifida kid. Fair enough.

5. “I don’t know how you do it.”

Honestly, I think “I don’t know how you do it” anytime I see a mom with more than two kids. And I think this about some of my fellow spina bifida moms that have kids with higher medical needs than Caleb. I’m overwhelmed by all they have on their plate and wonder how they do it. But the truth is that I could do it and would do it if I had to.

I’ve heard all of these and then some over the past seven-plus years. I’ve had my feelings hurt more times than I can count. I’ve wanted to smack people for staring and for saying inconsiderate things. But I’m realizing that the vast majority of people mean no harm. I think I have been too sensitive, too quick to assume everyone who stares is being ugly or everyone who gives me the head tilt along with “I’m sorry” is expressing pity. Maybe, just maybe, most people are nice. They are curious. They want to ask questions but they might not ask the way we want them to. And that’s OK.

I fear we’ve made it too hard for people to say the right thing. I think most people want to say the right thing, but they just don’t know what it is so they say the first thing that comes to mind and often it’s the wrong thing to say.

I guess my point in this ridiculously long post is that I’ve been too sensitive. Maybe we all have. So the challenge to myself (and to you as well) is to filter the reactions, whether it’s a comment or a stare, with the assumption the person means well. Assume they have good intentions. Use it as an opportunity to educate. We know our kids are awesome, so let everyone else know it too. Are there some people who are just plain mean and will say awful things on purpose? Yes. But I do believe those folks are the minority and not worth our time anyway.

The more things we add to the “Don’t say this!” list, the less we make ourselves available. We have made it hard for people to know what to say because we keep adding to the list of things not to say.

I’ll get down from my soapbox now.

Follow this journey on Beyond Measure.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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.

1k
1k
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

This Redditor Called Out a Minor League Baseball Team’s Epilepsy Awareness Night

45
45

On Tuesday, Reddit user Thugzz_Bunny posted a screenshot in the site’s “Funny” subreddit of a tweet advertising a minor league baseball team’s epilepsy awareness night.

My hometown minor league team must not know what epilepsy is,” the user wrote, with this photo attached:

The tweet was for the Chattanooga Lookouts‘ first annual “Strike Out Epilepsy” awareness night, which featured a postgame fireworks show on August 7. More than 4,000 people attended the event in Chattanooga, Tennessee, according to the Epilepsy Foundation Southeast Tennessee. Players also wore purple, an epilepsy awareness color, for the game.

Some Reddit users found the postgame activity ironic because for someone with photosensitive epilepsy, flashing lights or contrasting light and dark patterns can trigger seizures, according to the Epilepsy Society. If viewed too closely, fireworks can be dangerous for someone with photosensitive epilepsy. It’s important to note that contrary to popular belief, not everyone with epilepsy is affected by flashing lights or fireworks. Of the 65 million people who have epilepsy, about 3 percent have photosensitive epilepsy, according to the Epilepsy Foundation.

This Reddit user is not alone in pointing out the potential threat of flashing lights to people with photosensitive epilepsy, though. Recently, both Twitter and Virgin Media came under fire from an epilepsy charity group for posting flashing videos that could potentially trigger seizures for people with photosensitive epilepsy.

h/t Reddit

45
45
TOPICS
JOIN THE CONVERSATION

When a Store Clerk Told Me to ‘Get Out’ Because I Had a Service Dog

316
316

When people meet me, they don’t usually realize I have Asperger’s syndrome and a brain tumor. After years of utilizing coping skills, I finally got the tool I needed to function optimally: a service dog. 

My husband and I knew it might bring some challenges since people would want to ask questions, so I carefully practiced answers and educated the staff at stores and restaurants where I often went before I took my dog with me. My first solo trip with my service dog seemed simple. Drive two miles from my home and walk into a convenience store where I was known to the staff, pick up a Diet Coke and a candy bar and drive home. Taking my service dog with me shouldn’t have been a problem since I had already educated the manager and staff about bringing my dog.

It was a sunny fall day, and I pulled the door open and my service dog, Bella, walked calmly at my side as we entered. Unexpectedly, a shrill scream pierced the air. “Are you blind? Get that dog out of here!” Shocked, shamed and confused, I glanced at a new clerk who stood at the nearest counter. She pointed at the door. “Get out! Are you dumb? And deaf?” I could not believe the insults; they burned into my heart.

From the corner of my eye, I saw a second clerk I knew wave at me as Bella and I hurriedly left and other customers watched this rude display. I had no words as tears flowed down my face and I drove home. I sat wordless as Bella pressed against me, silently comforting me. I was in turmoil and couldn’t sort or express my emotions.

My husband came home 20 minutes later, and the phone was ringing off the hook. He had stopped at the same convenience store and heard a very interesting story. The second clerk came forward and educated the new clerk about the Americans with Disabilities Act (ADA). She indicated that service dogs had public access and, if necessary, there were two questions to ask: Is the dog necessary for a disability and what work or tasks does the dog do? IDs and vests were not necessary. 

My husband suggested I answer the phone. The clerk who had been so rude made the effort to call and apologize to me. I listened and accepted her apologies, but it didn’t erase the deep hurt and shame I felt when I left the store.

The clerk also attempted to ask many questions about my disability and medical condition. It was difficult for me to deal with this conversation, but I took it as an opportunity to discuss the ADA and service dogs, so other service dog teams who entered the store would have an easier time. 

We ended our conversation on a good note. Despite the apology, it took hours of work to process my emotions due to my disability and days passed before I went back into the local convenience store. When I did, I noticed a sign that stated, “No pets, service dogs welcome.” I felt I had been a small part of that change in our community. If you have a service dog, you may face questions and access challenges no matter how prepared you are. But be strong. You never know how you might help change a piece of the world.

Lesley Nord the mighty.1-001

316
316
JOIN THE CONVERSATION

To the Anxiety That Makes Life Extremely Hard for My Daughter With Autism

627
627

To my daughter’s Anxiety,

It’s been a while since you and I fell out. Today you made me angry even though I wasn’t your target. You see my daughter is 6 and has autism. It makes her day to day life extremely hard at times as she attempts to navigate the world and find her place. It’s not helpful when you come along and add to the mounting stress she already feels. I know you often tag along with your friend, autism; you seem to be closely connected.

We had a lovely playdate arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did. We talked it through loads and off we went. But some days there just isn’t enough planning in the world and you seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother and she threw whatever she could get a hold of. She refused to get out of the car so we sat there, her crying and her brother unsure. You had her, and you were winning.

I wanted to yell and scream at you, Anxiety. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy, did I have some select words for you. I wanted to cry, truth be told, because I’m exhausted, overwhelmed and often feel out of my depth trying to do what’s best for her. Trying, as a parent, to make her world as easy and understandable as I can, while also trying to keep her safe. I have to think with and about her 24/7, and when you decide to stop by it’s a hundred times worse. She’s likely to run at any given moment, and it’s scary.

Instead, I wish to thank you, Anxiety. You see, every time something like this happens, it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. It seemed like she was angry at the feelings she was having. I know deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm, I bent down and gave her a choice – go to the playdate or get back in the car and go home. I was calm and fair, she knew either would be OK with me. And do you know what? She chose the playdate. After a few more minutes of calming down she had a great time. It was a lovely day after all.

Thank you for attempting to take my daughter down today. You’ve shown me she’s not going to let you win, even at the age of 6. She made a choice to put you aside and remind you that you don’t get to rule her life. I would say better luck next time, but I don’t want to suggest I’m offering you a seat our next day out. I will just bid you farewell for today. We’ll see you when we see you. We’ll be ready for you every time.

Yours Sincerely,

Blooming Autism

Follow this journey on Blooming Autism.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

627
627
TOPICS
JOIN THE CONVERSATION

Parents Claim Dance Studio Turned Away Their 8-Year-Old With Down Syndrome

292
292

Anna Winnicki loves to dance. The 8-year-old with Down syndrome has been dancing since she was 2 and has danced with studios for years.

So when Anna’s parents, Tricia and Jason Winnicki, tried to enroll her in a dance studio near their home in Buffalo, New York, they were shocked that the studio turned them away, WIVB News reported. Tricia Winnicki said the studio owner told her the school was unequipped to manage her daughter’s needs.

The Mighty reached out to the dance studio in question for a comment, but has not yet heard back.

“She’s a kid. Every kid should get the same chance to try things and to be a part of things,” Jason Winnicki told WIVB News in the video below. “It shouldn’t matter about a disability. It should be about [letting people] try.”

Anna’s story has prompted a large response from the community. Since the story was posted to the WIVB Buffalo Facebook page on August 13, it’s been shared more than 1,200 times and received hundreds of comments. Many people voiced their support for Anna and suggested other more inclusive dance studios in the Buffalo area.

“Keep on dancing, Anna, you are perfect just the way you are!” one commenter wrote.

The Winnickis say Anna will continue to dance at Center Stage Dance Studio where she was previously enrolled.

Hear more about Winnickis’ story in the video below.

292
292
TOPICS
JOIN THE CONVERSATION

Can Music Help Prevent Seizures?

37
37

A recently presented study suggests the brains of people with epilepsy experience music differently than those without the disorder.

“We believe that music could potentially be used as an intervention to help people with epilepsy,” said Christine Charyton, PhD, adjunct professor and visiting professor of neurology at The Ohio State University Wexner Medical Center, when presenting her team’s research at the American Psychological Association’s 123rd Annual Convention in Toronto.

Charyton and her colleagues studied the effects of music on the brains of people with and without epilepsy, in the epilepsy monitoring unit at The Ohio State University Wexner Medical Center from September 2012 through May 2014. They recorded brainwave patterns while patients rotated between listening to 10 minutes of silence and then songs like Mozart’s “Sonata for Two Pianos” or John Coltrane’s “My Favorite Things.”

Charyton said brainwave activity in people with epilepsy “tended to synchronize more with the music, especially in the temporal lobe, than in people without epilepsy.” Temporal lobe epilepsy accounts for 60 percent of all patients with epilepsy, according to the Epilepsy Foundation. The temporal lobe, where seizures often begin, is also where you’ll find the auditory cortex, which helps the brain process music. The synchronization that Charyton witnessed may suggest that when people with epilepsy listen to relaxing music, it can help prevent seizures. However, the research presented doesn’t suggest music should replace current epilepsy treatments or therapies, but can instead be “used in conjunction” with current seizure prevention methods.

37
37
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.