4 Things I Want People to Know About Central Auditory Processing Disorder

A kid stands there as you tell them to fold their laundry. This kid doesn’t respond. You may think he’s deaf, but just a few minutes later he says “OK.” He starts to fold their laundry, and you feel puzzled as to why it took this kid so long.

When I was younger, my mom had someone teach me basic American Sign Language. I wouldn’t look at my mom and would never respond even up to the age of 3 and 4. People would suggest to her I was being a disobedient child who was ignoring her.

After I had a hearing test, my mom was told that I had keen hearing like a dog so she knew I had an undiagnosed learning disability. She was a special education teacher so she had me tested. I was diagnosed with central auditory processing disorder (CAPD). I have seen some books about it, but I don’t think there’s enough information out there about it. So let me tell you a few things to help educate you.

1. My brain is wired differently.

It might take a few more seconds later for me to comprehend what you just said to me. I might not actually ever hear you. The words might be jumbled all over the place and I might hear something completely different. I might hear “cat” when you say “hat.” I might say, “What?” way too often. Sometimes after my “Whats?” I will respond because I finally heard what you said. My brain is wired differently and that’s OK. I been told since I was younger that some of the wires make it to my brain from my ear and sometimes they don’t.

2. School is difficult.

I can comprehend visual teachings right away and memorize them for life. But when a teacher provides only verbal instruction, it’s hard to understand the lesson. That’s why I need a note-taker or notes from the teacher. I may need to re-read the textbook to understand what heard in class. This happens both in elementary school, high school and college, too.

At 26 years old, I still need accommodations of a note-taker in courses in order to learn during lectures. School is only difficult because most of the time professors only teach verbally. We need to help the visual learners, too!

3. It’s a learning disorder for life.

There is a lot of information online for children who have or might have CAPD. Please understand it happens in adulthood, too. A lot of people mistake it for attention deficit disorder (ADD), but it’s really a disorder in understanding speech. I can understand one-on one-conversations better than group conversations. Every word from each person starts to jumble together and everyone’s voice is a background conversation. Bars, clubs and a group of more than three is difficult. I may start to stare into oblivion because my brain cannot separate words from sounds.

4. I’m not ignoring you.

I may ask, “What?” too much or I will move on from a sentence or a question because I can’t figure out what is being said. I’m not ignoring you. I just don’t want you to get mad at me from asking, “What?” too many times. I ask my family and friends to write down what they need me to do because if you only verbally tell me what you need me to do, I won’t be able to follow or remember. I need to see something or have it written in front of me.

Here’s some advice on how you help a person with CAPD at home, college and in life:

  • Keep the background noise to a minimum.
  • Arrange note-takers for classes.
  • Write things down for someone.
  • Make sure the speaker is looking at the person with CAPD. Make sure the person with CAPD is looking at the speaker.

And here’s some advice for people with CAPD.

  • Learn how to read lips.
  • Know it’s OK to ask someone to repeat a question.

There are more people in the world with central auditory processing disorder than you realize. Maybe you know someone, have a kid or you have it yourself. Maybe you just met someone or would just like to know more information. I hope this helps.

Lead photo source: Thinkstock Images


Lawsuit Filed Against Sheriff Accused of Handcuffing Kids With Disabilities

On Monday, August 3,  the American Civil Liberties Union (ACLU) filed a federal lawsuit against a Kentucky police officer for handcuffing two children with disabilities, according to the ACLU website.

Kenton County Deputy Sheriff and school resource officer Kevin Sumner allegedly locked handcuffs around the small children’s biceps at a school in Covington, Kentucky. The ACLU claims the experience was both painful and traumatizing to the children.

The lawsuit asks the U.S. District Court for the Eastern District of Kentucky to declare officer Sumner’s actions to be unconstitutional and a violation of the Americans with Disabilities Act, according to the lawsuit. It claims that the allegedly illegal handcuffing was an unnecessary and excessive use of force.

The ACLU released a video showing an 8-year-old boy shackled and crying out in pain. The video description says that he was left in that position for 15 minutes and that he was restrained because of behavior related to attention deficit hyperactivity disorder (ADHD) and a history of trauma. An unnamed member of the school’s staff took the video.

See the video of the incident below: 

The incident took place in November and the boy, a third-grader, is identified only as S.R. The lawsuit alleges that another child, a 9-year-old girl identified as L.G., was restrained in a similar way on two separate occasions because of behavior related to ADHD and other special needs.

Shackling children is not OK. It is traumatizing, and in this case it is also illegal,” said Susan Mizner, disability counsel for the ACLU, in a statement on the ACLU website. “Using law enforcement to discipline students with disabilities only serves to traumatize children. It makes behavioral issues worse and interferes with the school’s role in developing appropriate educational and behavioral plans for them.”

The ACLU is joined in the suit by the The Children’s Law Center and a Cincinnati law firm called Dinsmore & Shohl. The complaint seeks to change the policies by the Kenton County Sheriff’s Office in addition to requiring training for school resource officers in dealing with young children and children with special needs. It also seeks an unspecified amount of monetary damages against Sumner.

For more information, visit the ACLU website.

What a ‘Great Day’ Means to a Person With Chronic Illness

What makes chronic disease so challenging is that we’re never 100 percent. Our great days are different from yours; I promise you that. I think many of those who love us can misunderstand what a great day means to us, and sometimes feelings can get hurt. So let me share my parameters with you, and then maybe you can share yours or use this for conversations with your doctors, friends and family.

I have a baseline I consider my normal. I accept that my baseline is not perfect. It comes with serious and often excruciating pain and fatigue. My symptoms are managed with medicines that we dial up and down, depending on the severity of my symptoms. Within that baseline I have some great days, some good days and some bad days. This is my life and as a family we live in the baseline; we accept it and made peace with it.

So I have bad days in my baseline, too. Having a bad day means I stay in bed, watch TV and rest. On good days, I run errands, make dinner for the family and go to bed happy at 8 p.m. feeling satisfied and successful. A great day is a good day with a movie or the beach tossed in. All of these days are still filled with pain and discomfort. The pain is tolerated and managed. I can guarantee you that if I have a great day, the next day is a PJ or sweats day because I need to take it easy. It’s a dance. It takes practice.

On the scale of 1 to 10, I will never have a day that’s a 10. My body is not in the 10-generating business. For me, a 10-worthy day would be a day without pain, and I’d have the energy to do a full day of work and activities.

I want 7’s and would love two hours of an 8. I accept and celebrate a few hours of a 7 or an 8 on any given day. So that’s my goal. I try to make the best use of the energy and pain management on a given day. I need to take a siesta every day if I want to make it to dinner. That means I need to lie down on my bed for at least an hour or maybe two.

This is my life, my normal and I’m happy in this place. I take great comfort in this baseline. I recognize to many that it may seem limited, but I’m happy here. I don’t need much other than to enjoy and bask in the great days I get to spend with my family and friends together.

My baseline changed in May after a simple case of strep throat developed after my daughter, Norah, went on a third-grade field trip. (Let me be clear: I would do that field trip over and over again because third-grade field trips are amazing.) I’ve been battling for months, and in the last week, well, my body decided it was time to crumble. When my thoracic pain was too intense and I couldn’t find a break from the pain, we moved out of our baseline into messy territory, which is a flare.

A flare for me is when the pain and inflammation is widespread, systematic and unrelenting.I won’t call a flare a flare until it’s kept me in bed a solid three or four days. In the past, a flare also required extended stays in hospital. Now thanks to my amazing medical team, most of my care can be done as an outpatient treatment, and I can sleep in my own bed. When my lungs and heart get inflamed, I like to sit with my back up against a wall. It makes it easier for me to breathe somehow. If I lean forward, the pain is excruciating, and if I sit perfectly straight and don’t move, it’s tolerable.

The hardest part of managing a chronic disease is you never know how long a flare will overstay its “unwelcome.” The other problem with a flare is that if you do too much (like I did this week), it just sets you back even further from returning to you baseline. And so, planning becomes challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up a contingency on top of the contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it’s a hot mess.

a family including mother and father and son and daughter

I’m writing this for all the other pilgrims with chronic diseases who may not have the support and love that I do. Many of our loved ones are so thoughtful with dinners, carpools and visits. If you’re a loved one of someone with chronic illness, here are some things I think you should keep in mind:

Don’t ask if we’re feeling better yet. Instead, ask us, “Is today a good day?” Sometimes nothing hurts more than being reminded you “were” doing well. And whatever you do, don’t ask us if we overdid it to get here. That doesn’t help. We all want the same thing: to be one day closer to our baseline. Please be patient with us.

Tell your loved one that you love them and that you’re praying and thinking of them.

Make us laugh. Nothing makes me happier than to hear stupid stories when I’m in bed. I think trashy gossip magazines and mindless books are wonderful.  

Spend time with us. Just last night, my husband, Jeff, took me in my PJs to the beach. I just needed to look at the ocean. That was perfection. I watched the kids pick up shells, and I could see, smell and taste the ocean from the passenger seat. So offer to drive the getaway car for a friend or offer your own sofa. After being stuck in your house forever, sometimes another venue is delightful.

Today, I’m one step closer to my baseline,  and I’m humbled and grateful for all the love, prayers and notes from my loved ones.

Follow this journey on Pilgrimage Gal.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. 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.

Liz Jackson poses with purple cane

J.Crew Said No to Her Idea for Accessible Fashion. Here’s What She’s Doing Now.

In March 2012, Liz Jackson unexplainably fell out of bed. She went to the hospital and was diagnosed with idiopathic neuropathy, an autoimmune condition that affects the nerves in her arms and legs. That was the moment her entire life changed.

“[The diagnosis] led to a tough time in my life, because I came out of the hospital and needed eyeglasses and a cane,” Jackson, now 33, told The Mighty. “What do you do? How do you pick up the pieces and go back about your life even though the most basic way you look has changed?”

Liz Jackson poses outside with cane and briefcase
Photo credit Hanna Agar Photography

After a difficult six months, Jackson slowly began embracing the person she’d become. She bought a bright purple cane to replace the bland, unremarkable one she’d been using. Once she began walking with the new purple cane in public, something interesting began to happen — passersby on the streets stopped asking her what was wrong and telling her to feel better.

“Instead, they were complimenting me and asking where I got [my cane],” Jackson told The Mighty. “It made so many things so much better.”

Liz Jackson poses with purple cane
Photo courtesy of Liz Jackson

It was around this time that Jackson visited a J.Crew store in her hometown of New York City, and two things stood out to her. She noticed the retailer sold eyeglass frames, which require a prescription for the lenses, but nothing like a cane, which requires no follow up action with a medical professional after purchase. She also saw an array of colorful T-shirts on display and noted how well her purple cane would have fit in with the color scope.

Jackson reached out to J.Crew in 2014 to ask if they would consider selling canes in their stores and was told “no” without explanation. That was the moment #YesJCrewCane, Jackson’s public campaign to convince retailers like J.Crew to carry fashionable assistive devices like canes, was born.

canes drawn in on J.Crew catalog
Photo courtesy of Liz Jackson

Jackson started a Change.org petition to convince J.Crew to help reduce the stigma surrounding assistive devices by selling fashionable canes in stores. She’s reached out to the retailer multiple times. Every time, she was given a noncommittal response or a flat-out “no.”

But Jackson’s just getting started.

“I realized I don’t need to ask J.Crew anymore,” she told The Mighty. “I need to show them.”

Jackson already has her sights on a new project. She recently designed an “NYC Seat Share” badge people without disabilities can wear on the subway to indicate they’re able and willing to give up their seats for people with disabilities. That way, those who need subway seats don’t have to ask others to give them up. She recently met with a commissioner at the Mayor’s Office for People With Disabilities in New York City, who supported the idea. Jackson will begin working with a designer in the next few weeks and hopes the badges will be available by the end of 2015. She’s also advocating for designers to create pieces like a one-handed zipper or loose-fitting clothing that don’t differentiate between people with and without disabilities but can be worn by as many people as possible, The New Yorker reported.

Jackson told The Mighty she hopes to work with retailers like J.Crew in the future on how they could incorporate products that help people with disabilities, like purple canes and the seat share badges, into their brands.

“I’d like to tell [other retailers] to try it,” she told The Mighty. “It’s scary, it’s new, but that’s how people with disabilities feel when they first [become disabled]. The best way [retailers] could pay homage to their customers who are disabled is to do it when they’re uncomfortable. So, just do it.”

Liz Jackson poses on a bench outside with cane and a briefcase
Photo credit Hanna Agar Photography

 To learn more about Jackson’s advocacy work, visit her blog, The Girl With the Purple Cane. To learn more about her campaign to get department stores to begin selling , search the hashtag #YesJCrewCane campaign and visit her Change.org petition.

Why Mark Zuckerberg and His Wife Opened Up About Their 3 Miscarriages on Facebook

While miscarriages aren’t discussed regularly, they’re more common than you might think. Anywhere from 10 to 25 percent of clinically recognized pregnancies will end in miscarriages, according to the American Pregnancy Association.

Friday, Facebook founder Mark Zuckerberg announced his wife Priscilla Chan’s pregnancy in a Facebook post. While the couple is excited to welcome a baby girl into their family, the road to this announcement hasn’t been easy.

Zuckerberg and Chan have had three miscarriages before this pregnancy. In his Facebook post, Zuckerberg wrote:

You feel so hopeful when you learn you’re going to have a child. You start imagining who they’ll become and dreaming of hopes for their future. You start making plans, and then they’re gone. It’s a lonely experience. Most people don’t discuss miscarriages because you worry your problems will distance you or reflect upon you — as if you’re defective or did something to cause this. So you struggle on your own.

Zuckerberg and his wife know the pain of a miscarriage and want to help others going through it feel less alone. He hopes that other people will feel comfortable sharing their own stories after reading theirs. As of Monday, Zuckerberg’s Facebook post had more than 48,000 shares.

Priscilla and I have some exciting news: we're expecting a baby girl!This will be a new chapter in our lives. We've...

Posted by Mark Zuckerberg on Friday, July 31, 2015

We commend this couple’s strength. Read Zuckerberg’s entire post below:

Priscilla and I have some exciting news: we’re expecting a baby girl!

This will be a new chapter in our lives. We’ve already been so fortunate for the opportunity to touch people’s lives around the world — Cilla as a doctor and educator, and me through this community and philanthropy. Now we’ll focus on making the world a better place for our child and the next generation.

We want to share one experience to start. We’ve been trying to have a child for a couple of years and have had three miscarriages along the way.

You feel so hopeful when you learn you’re going to have a child. You start imagining who they’ll become and dreaming of hopes for their future. You start making plans, and then they’re gone. It’s a lonely experience. Most people don’t discuss miscarriages because you worry your problems will distance you or reflect upon you — as if you’re defective or did something to cause this. So you struggle on your own.

In today’s open and connected world, discussing these issues doesn’t distance us; it brings us together. It creates understanding and tolerance, and it gives us hope.

When we started talking to our friends, we realized how frequently this happened — that many people we knew had similar issues and that nearly all had healthy children after all.

We hope that sharing our experience will give more people the same hope we felt and will help more people feel comfortable sharing their stories as well.

Our good news is that our pregnancy is now far enough along that the risk of loss is very low and we are very hopeful.

Cilla and our child are both healthy, I’m extremely excited to meet her and our dog Beast has no idea what’s coming. In our ultrasound, she even gave me a thumbs up “like” with her hand, so I’m already convinced she takes after me.

We’re looking forward to welcoming her into the world and sharing more soon when she’s ready to come out and meet everyone!

My 6 Tips for Traveling With a Child With Special Needs

We’re so lucky to have one of the best dermatologists we could imagine, and he has always encouraged us to do anything we normally would as a family even if it takes extra planning or if we need to get creative.

One of those things is traveling.

Even though traveling can be challenging figuring out the logistics for my daughter Brenna’s skin care and working around the various weather conditions (we couldn’t believe how much the dry state of Colorado affected Brenna’s skin; we had to apply nearly twice the usual amount of Aquaphor!), we’re grateful for the chance to show our kids some other parts of the country and give them new experiences. Since Brenna’s first vacation two years ago, she’s now been to 11 states. We haven’t flown yet, but that’s coming next year.

Here are six things I learned about taking on the open road with two small kids and caring for a medical condition along the way:

1. Always know where the closest children’s hospital is.

A physician we saw in Chicago made this comment to us after Brenna’s gastrostomy tube (G-tube) was placed, and it was one of those obvious statements we had never considered before. We researched surrounding hospitals on Brenna’s first trip, and we actually had to stay overnight in a children’s hospital with my son Connor on last year’s vacation.

2. Alert your physicians/specialists and work out a plan for contacting them after hours if necessary.

We’ve called our pediatrician from the road and texted photos of Brenna’s skin to our dermatologist while traveling. We also coordinated a prescription to be picked up at a pharmacy during a stop. Things always seem to pop up on vacation, but when you’re dealing with a serious medical condition, it’s really important to be able to contact your doctors.

3. Bring way more than you think you’ll need.

If you have the luxury of traveling by road instead of plane, you can pack the trunk full of anything you think you might need. Of course, you can always purchase many things while on vacation, but if there are special products, like prescription meds you use only occasionally or favorite foods, bring it all. That also goes for any extras like a back-up G-tube or any other medical items.

4. If there are special accommodations that need to be made at a hotel, restaurant, theme park, etc., call ahead.

Keep a clear record of the agreement of those accommodations and have a plan in place to carry them out if necessary. We haven’t had to do this yet, but I’m already anticipating some contact with the airline before our trip to the FIRST Family Conference in California next year.

5. Let it go.

Caring for your child on the road might may not match up with what you can do at home and that’s OK. I think that “good enough” is much easier for traveling. We always look forward to a great bath after a trip, but Brenna’s skin has been fine when we let her enjoy vacation even if it’s not at its absolute best.

6. Realize that it may be tiring, but it’s so worth it.

I think traveling with small kids or children with special needs gets easier the more you do it. I thought our first vacation would be miserable, but the kids rode more than five hours without stopping with very little fussing. And the whole week was much less stressful than I had imagined. Practice with smaller, more frequent trips. I’m glad we had some three- to six-hour trips under our belt before we drove across the country last year.

Courtney Westlake the mighty.1-001

Follow this journey on Blessed by Brenna.

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