Erin's son doing gymnastics on the beach.

When People Say My Son With Invisible Disabilities 'Looks Fine'

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My son is 12. At first glance he looks completely typical. He’s athletic, muscular, handsome, and quick to smile. Gymnastics are his favorite sport. He was thrilled when I signed him up for classes. He’s good at gymnastics because running, jumping, and strength training come easy for him.

What no one can see is the PTSD he carries from years in an orphanage. No one knows he just learned to speak English; his accent is hardly noticeable now, but expressive-receptive language disorder presents the same in any language. Severe dyslexia that went undiagnosed and without intervention for most of his life can make reading and writing a colossal task for him. He feels “dumb” and struggles with self-esteem. I am trying to boost his self-image by involving him in things he is good at.

Auditory processing disorder is invisible, but the effects are not. It often looks like “not listening,” but his brain is scrambling to figure out what you want him to do. He wants to please, but sometimes he cannot compute what is said in what is considered a reasonable amount of time. I homeschool him now because in public school, his anxiety and fear of getting things wrong became overwhelming. He is terrified of disapproval, but could neither read nor clearly understand what was being said. The “simplify instructions” and “repeat instructions as needed” accommodations in his IEP didn’t seem to matter if he was raising his hand to ask just one.more.time. Frustrated at the lack of proper accommodations, he often had meltdowns after he got home.

“He looks fine” is a phrase I came to hate. Looks can be deceiving. He is smart, funny, and amazing, but the challenges he deals with are far from “fine.”

A gymnastic coach told him last week in front of the class, “You have slow listening.” He was really crushed by it. The place where he excels most pointed out his weakness.

It hurt me to hear that. Yes, he does have slow listening, but it doesn’t mean he is not listening. It left me angry, and confused. Do I speak with his coach? Do I ignore it?

Auditory processing disorder. Dyslexia. Expressive-receptive language disorder. Does anyone really take the time to look these up and understand what they mean besides parents? I write diagnoses down on forms, yet watch my boys get called out for aspects of their disabilities as if they are at fault.

Invisible disabilities are both a blessing and a curse. There is no parking tag, no hearing aids, no wheelchair. People with invisible disabilities blend in and are expected to act like everyone else. When they do not, the first action often isn’t to offer help, but to shame.

My daughter with cerebral palsy takes gymnastics at the same gym. The coaches are fantastically accommodating with her physical limitations. They are encouraging and push her to be the best she can be. There is no comparing her to the typical kids in her class. No one would ever tell her she has “slow running.” She already knows that, of course, just like my son with auditory processing disorder knows he has slow hearing. Criticizing a child for an invisible disability is no less devastating than if they were in a wheelchair and someone demanded they walk faster.

Parenting kids with both invisible and and physical disabilities is a difficult balance. I sit and watch as time after time, people are openly sympathetic and accommodating to my daughter who is fiercely independent, yet ignore the not-so-visible needs of my sons who just want to do well. This parenting journey has opened my eyes to many things I never knew existed. Daily, I witness the struggle of looking the same when everything works differently. Sometimes I want to explain it to the world, and some days I just wish I didn’t have to.

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What I Wish People Understood About Nonverbal Learning Disabilities

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I have had to deal with a nonverbal learning disability my whole life. It has not been easy, but I am a glorious survivor!

Through a career encompassing two Master’s degrees in Special Education, School Leadership, and School Administration, and being an actual teacher of special education classes, I have been pressing to educate society. In my deepest heart I believe the public should be aware of what I, and others like me, need to do to succeed in a world of people who don’t know and often, don’t seem to care about our condition.

But I care. In fact, my very life depends on you, my reader. I’m not kidding. I’m not exaggerating. In my experience, you — my reader — and even doctors, psychologists and psychiatrists know very little about nonverbal learning syndrome. That may be because a person who has a nonverbal learning disability does not have symptoms that are directly observable to the human eye — but make no mistake, the symptoms are there.

First of all, a syndrome is a group of symptoms and not just one symptom. I’m not talking about physical symptoms you can see — and that makes it even harder for me. I don’t look disabled, and when I begin to talk, my speech is just fine, so it takes a little while ’till you begin to sense I am different in some way — but still, you’re not sure because I look OK. Soon, it starts: I may say something that’s a little off-putting to you even though I don’t mean to do that.

I almost always have difficulties communicating with others both orally, and in a warm and natural way. Too many people think my reactions are not appropriate for me to ignore it. For example, I may actually begin to cry when something you say reminds me of a sad thing in my own life. Or I may interrupt you in a way others think is rude, but it’s usually because I really don’t know how to join a group conversation.

Did you know experts agree that 65 percent of all communication is done nonverbally and only 35 percent is done verbally? For example, some people with a nonverbal learning disability can demonstrate a high level of expressing themselves orally, but cannot read into others’ cues. That’s me! Call it a verbal problem or a nonverbal problem — the expression of words is almost always accompanied by nonverbal cues… and that’s hard, often impossible to get, for someone like me who owns the syndrome.

If someone says something sarcastically, she usually does things with her eyes and face that say she’s being sarcastic and doesn’t really mean what she’s saying. But I hear only her words — I can’t read her eyes or face. So I totally miss her true meaning. Even today, when I go to my own mom’s house and I see her sitting there with her eyes closed, it’s difficult for me to decide if she’s just resting, if she’s bored or if she’s angry. I know my mother very well, but I can’t read her unless she tells me what she’s feeling.

Another symptom I have is eye/hand coordination problems. Eye/hand coordination differs from person to person with nonverbal learning disabilities. For example, some of us cannot drive, but others can. I physically know how to drive, and I see well, but I have a poor hand grasp onto the steering wheel. If I can’t firmly hold the wheel, I’m a menace on the road. I also don’t have the memory to put together all the directions I need to drive in an unfamiliar place.

I went to sleep-away camp when I was little. I was always the last person called to join a sports team because I could not kick a soccer ball or swing a bat to hit a ball. I wished with all my heart I’d connect with that ball, but wishing never helped.

In kindergarten, my teacher came to visit my mother in our home, which was unheard of at that time. She told my mom I could not cut along a line with a pair of scissors or color within the lines (a common symptom of my problem). I also had a difficult time learning how to tie my shoelaces — but today, I can do that. I still have terrible trouble using a scissors to cut, though. But today I can say, “So what?”

My nonverbal disability expresses itself in something called dysgraphia — problems with writing skills. Dysgraphia does not go away and is something I have to live with for the rest of my life. I can hardly take notes in a class because my handwriting is very large and clumsy. Computers are a godsend, but I don’t always have access to a computer. I have difficulty with fine and gross motor skills, and I always have a frustrating time writing letters or even just choosing the correct size of letters to fit in a given space.

If I go someplace like to a doctor’s office or to a job opportunity and I’m asked to fill in an application on the spot, I’m in trouble. I will try to ask someone to be my scribe because the dysgraphia prevents me from giving the information I need to give in the small, allotted space of an application. I try to explain to people in charge that it isn’t because I don’t have the content they need, but that I have to write down the asked-for information at a slower speed from everyone else. No one usually understands. When I tell those in charge that the way I write may even make it impossible for them to read my application, they look at me blankly. If only society understood that when I have to ask for a scribe in these situations and am told, “You have to fill out the application by yourself like everyone else,” I am being treated unfairly. And, when I finally turn in my self-completed application, I am usually told it’s unreadable.

Grammar and spelling? I can be a great speller, but when my motor issues come into play, and the goal is for me to write my words down in a timely manner, I will make errors. People who have non-verbal learning disabilities may also make more grammar errors when writing, because our brains work slower than other people’s brains when it comes to writing down ideas. I may be able to read out loud with strong verbal expressions of what I’m reading, but I have difficulty trying to process it at the same time. Throughout high school and college, and even in graduate school I got an A for content, but I was always criticized on poor grammar and careless spelling. When I was awarded my first computer grant 25 years ago, I was given software to counteract my awful grammar and spelling. Only then could I concentrate on my ideas.

This right hemispheric learning problem is not usually recognized by teachers and other professionals who may aid in a child’s or adult’s educational experiences. There are currently few resources for the problem even in many private and public agencies geared to helping people with nonverbal learning disabilities. Too many of the workers in those agencies know nothing about it, so many children and adults such as myself are labeled as having behavior or emotional problems.

Individuals living their whole lives with nonverbal learning disabilities often display poor self-images. How can we not? We’re always told we’re acting badly. Worse still, this lack of self-image itself may render poor visual recall and faulty spatial recognition. I have difficulty recognizing faces, interpreting gestures and deciphering facial expressions. I have a difficult time communicating with people in social situations, with no idea how to transition into conversations. Right-to-left orientation problems, memory and coordination difficulties cause me stress. Up until recently, I could never remember my cell phone number, until my aging mother wrote it on a piece of paper to paste to the back of my phone.

I could never – and still can’t – visualize images or verbalize about something I have not personally seen. Or, I may focus on details of what I have seen but often fail to grasp the total picture. I can recall distinct details of objects, but am usually unable to identify that item by its name. For instance, I remember going to Canada at the age of 6, and I saw, for the first time, a cow roaming in front of our cabin! I was so excited, but when I was trying to tell my mom what I saw just a short time later, I remembered it had large black spots, it was very large and it had spigots where milk came out. It took me over 20 minutes to recall the word cow.

Here’s my hardest thing to cope with. This lack of self-image and difficulty in identifying objects also prevents me from being able to maintain friendships with peers my age. I can’t remember faces. I was usually the last person called for a team. My own physical clumsiness didn’t help.
I was almost never given an opportunity to practice with my peers. Imagine always being rejected — and never told why. This has given me great sadness and grief my entire life. I just don’t get why I don’t have friends.

I usually learn by repetition. While I seem confused at times, I have a high level of intelligence and I understand receptive and expressive language — believe me! But issues with social communication are often brought on by misunderstanding body language and tone in other people’s voices. When growing up with nonverbal learning disabilities, I was able to process the words an individual was saying, but I had a difficult time comprehending non-verbal cues. I asked and asked others to explain better. They didn’t. Mostly, I was told, “You talk too much.”
I can’t count how many times I was told I talk too much!

People with my disability often bump into others easily when walking and have an increased risk of falling. When very young, I had severe issues climbing up on jungle gyms. It may sound insignificant, but believe me, when every other kid was climbing up a jungle gym, and I couldn’t, it was torture. I never forgot it.

I was always eager to help others, and once I fell down a flight of stairs at the age of 5 carrying chairs for someone. I had to wear a cast on my knee for two months. To this day I still cannot walk down stairs left/right or with any speed, and I have heard people call out “slow poke” on subway stairs or “Lady, move faster!” when I am trying to balance myself so I won’t fall.

I always have a difficult time placing or understanding written responses on a sheet of paper. For example, if I have to go to a place for the first time, even if someone explains how to do it, even if someone writes down the directions, even if I myself have written down the directions, I get lost. I usually find a way to and from a given location by identifying markers which will allow me to place a set of directions in my verbal memory. For example, my therapist’s office is about a block and a half from the receptionist desk in a large office building. So I know I must ride up to the 17th floor, past the receptionist desk, look for the area where the mail boxes are. At the end of the long mailbox area, I turn in the same direction as my left hand where I place my watch when I get up in the morning… and I’m there.

About that watch — a true short story. When I was in the third grade, I was doing phenomenally well because of an outstanding teacher. My mom gave me a present after I received a good report card. On my left hand, she placed her gift — my first watch with numbers I could read! She said to me, “Remember for the rest of your life, when you place any watch on this hand after you get up in the morning, this is your left hand. And, if you have to go left, follow that hand. If you have to go right, go in the opposite direction.” I remember this every morning when I get up, as if I was back in the third grade and my mom woke me up and placed a watch on my arm for the very first time.

The last issues that society almost always fails to understand when it comes to dealing with a nonverbal learning syndrome are the social situations involving awareness and social judgment. I usually fail to perceive and interpret social interactions accurately. I was never taught the correct way of processing those cues when I was younger. Maybe the adults in my life just didn’t know how to teach that. I have difficulty interpreting gestures and deciphering or reading facial expressions.

Take gestures: if I’m sitting at a table, and someone is tapping on the table with her fingers because she’s irritated, instead of searching for the true source of her irritation, I become so distracted by the noise her fingers are making, I can think of nothing else. And then I say something inappropriate she will take in the wrong way. Remember, verbal expression is only 35 percent of the conversation process. I’m usually missing out on the other 65 percent which is non-verbal expression. Individuals with a nonverbal learning disability almost always have difficulty with perceptual cues throughout the flow of a conversation, which hinders them in a give-and-take process.

What happens? I’m often told not only that I’m slow-moving, but that I am also discourteous, immature, or lacking in respect for others. Even self-centered. It started in elementary school, really, when I didn’t understand what the teacher wanted and I’d call out loudly with what was on my mind. I later learned that was called impulsivity—and I know I still have a bad case of it.

As an adult with a nonverbal learning disability, I have shared with you just about all the symptoms I have had to deal with my entire life. Writing an essay like this is the first step in letting people know about the syndrome I live with and the symptoms I need to learn to deal with, even now that I’m all grown up.

Learning how this can affect college, graduate programs and employment for the disabled can help everyone else to understand what nonverbal learning disabilities are all about, and help others to help me and people like me assimilate into society. That is my aim. Selfish? Maybe.
Essential? Bet on it! I depend on you — the individual without the nonverbal learning disability — to make my way in the world. If you make the effort to understand me, oh — I’ll do you proud.

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How We Embrace Our Neurodiversity as a Family

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There is no way of describing my family other than neurodiverse. We have many diagnoses including dyslexia, dyspraxia, sensory processing disorder, autism and social communication disorder. Our needs vary in complexity, and therefore the level of support and intervention each of us need varies.

I was diagnosed with dyslexia with possible dyspraxia when I was 25 years old. The psychologist said only possible dyspraxia because I would have needed an additional test to be sure, but from my dyslexia profile it was highly probable. At this time, I was already a mother of two and had started studying psychology at university. It became apparent within my first term at university that I would need to self-refer for a dyslexia assessment. I was struggling with the amount of reading that was expected, and found organizing my work extremely difficult.

As a teenager, I was pretty sure I had dyslexia. I was very aware that the way I thought and the way I composed my writing was different from my peers. My ability to read written words is mostly unaffected, but processing and remembering what is written is compromised. What I find most frustrating is that the actual process of reading exhausts me. I love to learn, but it’s difficult when reading for any length of time and remembering what is taught takes me such a long time.

I was relieved when I received my diagnosis. I no longer felt “stupid.” I accessed the specialized teachings, the university provided and I accepted my diagnosis and my difficulties for what they were. I praised myself for my average grades (that I felt never truly reflected the knowledge I’d acquired) and I spent this time learning about myself. I also realized around this time that I have sensory processing difficulties which affect my attention and mood.

During my time at university I learned so much about myself. I learned I could “keep up” if I used scanning strategies the specialized dyslexia tutor taught me, and that exams were so much easier when I could move the text around on a computer to organize my thoughts. I found out I attend better to what is being taught when I tap a pen between my fingers or tap my foot on the floor, and I need regular breaks so I don’t become overstimulated. But I didn’t realize at the time how much this journey of self-understanding would later help me as a parent.

Out of my three children, one is diagnosed as on the autism spectrum, and the other is awaiting a diagnosis. I learned about autism through my degree. But most of my current understanding has come through self-directed study (always the way I have learned best) as well as learning and responding to what my children need as individuals. It is very true when people say no two children are the same, and each of my children need different support to maintain their learning and well-being.

Understanding my own differences has enabled me to in turn embrace and celebrate my children’s differences. We may not have the same strengths or struggles, but we do have a shared understanding that we are different from our peers. We may need to work harder to achieve in different areas, but I hope that in my acceptance that this is OK, my children will also grow to believe the same.

Being different from your peers is not a “bad” thing. I would never have guessed when I was at school that I would love to write and continue my learning throughout my adult life. I hope to continue to teach my children their differences are a gift, and that thinking differently can be a wonderfully positive thing. For it is within our differences that we find our uniqueness, and within our individuality that we shine.

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How Peppermint Patty Inspired Me as a Person With Learning Disabilities

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It took my parents a long time to teach me how to read. This was a long time before we knew there was anything “wrong” with me. I was just a slow bloomer back then. My parents were so patient with me. I can remember them sitting with me with a book and helping me sound out words. I was slow at learning, and it worried them. The thing that finally clicked for me was Charles Schulz’s “Peanuts” comics. They were simple enough that I could read them on my own, and I really liked them. My parents were thrilled. They didn’t care that I was reading comics. They were just happy I was finally reading something on my own and getting enjoyment from it.

“Peanuts” was the start of a love affair with books for me. I can’t remember who introduced me to them or when I started reading them. I just know they were the first thing I started reading on my own. I liked that the words were big and easy to read, and the pages weren’t filled with too much stuff for me to take in at once. Heck, some of the pages had just pictures and no words at all. It was an easy introduction to literature for me. I hated “big kid” books that were packed with words. I found those books exhausting. “Peanuts” was perfect for me. It was simple and it was on my level. I also really connected with the characters. I could sympathize with a lot of the things they were going through.

My favorite character was Peppermint Patty. The first thing that drew me to her was how much we looked alike. We both had brown hair and freckles. It was easy for me to imagine myself as her. I liked how she was very much into sports and women’s rights and feminism. You could say she was one of my first female role models.

I loved how confident Patty was around her friends. She wasn’t afraid to stand up and start an argument about women’s rights, or tackle Charlie Brown to the ground and ask if he wanted to play a round of football. I liked how she wasn’t traditionally pretty, wore flip flops and shorts and a t-shirt, and had messy, uncontrollable hair. To me Patty is a good example of a well-written “strong” female character. She embraces traditionally “boy” things like sports, but doesn’t reject her feminine side either. She harbors a huge crush on Charlie Brown and sometimes questions her attractiveness.

The biggest thing I liked about Patty was how poorly she did in the classroom. I really sympathized with academic struggles, because I knew how it felt to be the kid in class who had no idea what was going on. I don’t know if Charles Schulz meant to write her as someone who was learning disabled. She always seemed like she was to me, and as a kid who had learning problems, it was great to be able to read about someone who was having the same struggles as me.

Patty tried her best in class, but was never able to focus enough in her lessons. She got failing grade after failing grade and it bummed her out, but it never really put a huge dent in her confidence and self-esteem. Patty knew she wasn’t good academically, but she didn’t let it get her down. She knew she had other strengths. She was a good friend, good at sports and passionate about women’s rights.

Peppermint Patty taught me that academic success isn’t the only thing in this world that matters. It’s OK if you fail that test. It’s just a test. The important thing is that you tried. Patty never lets her failures stop her from having another go at getting the right answer.

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When People Ask Why I'm Wearing 'Sunglasses' Indoors

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“Why are you wearing sunglasses?”

I’ve gotten this question often during the past 20 months. With each answer I give, people say they’re amazed at how I managed for 19 years.

I wear my “sunglasses” from the moment my eyes open in the morning till they close at night. I have Irlen syndrome, and my brain processes visual information incorrectly. It’s not an optical condition. I wear grey tinted glasses that help my brain process information and make my life a lot easier.

Without my glasses, I see moving patterns across everything. Up until 20 months ago, I had never seen the sky as blue; in fact I tried to avoid looking at the sky as it was awful for me.

I struggle to read. I’ve never read a full book. When I read, the page sparkles, rivers form within the text and it becomes wavy. I often listened to what others said about books rather than reading them myself. I could never read the board in school; I would copy off the person next to me. It worked, as I am now at university studying for my degree.

I have poor depth perception; I walk into things as I do not realize just how close they are. I always fall up and down stairs, because I see them as smooth slopes, making it difficult to judge distance.

I deal with debilitating migraines in certain lighting. I lose my speech, vision, and all strength in my limbs before vomiting. I am very light sensitive; I always have headaches, especially under fluorescent lights.

For 19 years, I had no idea none of this was “normal.” I thought everyone saw patterns across everything, that text moved and they got headaches. It took hearing someone else talking about how their child would see everything in triplicate for me to research Irlen syndrome. Then I realized I have it, too.

My tinted lenses massively reduce all the struggles I used to have. They’ve not fully disappeared, but they are a lot more manageable. I rarely experience patterns across things, I have only had one migraine in the last 20 months, and I find it easier to read, although I have yet to read a book. A pair of tinted glasses has made an amazing difference to me.

The next person you see wearing tinted lenses may also have Irlen syndrome. They allow them to experience the world in a less stressful and stimulating way. If you really must ask someone about their glasses, instead of saying “Why are you wearing sunglasses?” ask them why they wear tinted lenses. Many people with Irlen syndrome will be happy to explain how their condition affects them.

Take a few minutes to watch my video and see how well you could manage the way I did for 19 years. Could you?

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To My 6th Grade Self Who Lied About Having a Learning Disability

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Hey you. Yes, you in all your awkward, sixth grade, glasses-wearing, “brace face” tubbiness. Other people may have it better or worse, but when it’s yours it feels like the worst ever, I know. You, who just spent the last 10 minutes sputtering and turning tomato red when someone asked why you were in the “special class.” You lied and said you were there because of poor organization skills and because you wanted to get out of orchestra. That’s not true and you know it. You’re there because of a learning disability that you were born with and the learning disability will never go away.

You didn’t know when it first started, this feeling of shame, this feeling of needing to guard your disability like a terrible secret. Maybe it was when you first came to see the lunchroom as survival hour and started dreading those 30 minutes with every fiber of your being. Maybe it was when you heard some called the R-word and when you Googled the definition you realized that person was making fun of people like you. So you internalized the shame and whenever people asked you, it was one lie after another. You turned it into this massive deal. It was your own personal Area 51.

I wish I could tell you it’s going to get easier or that it goes away, but it doesn’t. Sorry about that. The learning disability is a permanent hitchhiker through life. I will tell you this though: After the umpteenth time of lying about it, you’ll realize something important.

Really, it’s not that big of a deal. Your brain is different! You aren’t like all those other people, you were made unique to you! The first time you explain to someone that you just have a learning disability so you need more time on tests, a huge weight will lift from your shoulders. Once you accept yourself, the feeling is phenomenal. So phenomenal that you will have to resist the feeling of screaming out the window, “I’m learning disabled!” Sure, you need more time to do stuff and no, you probably aren’t going to ever be a perfect socializer, but so what? When you denied the learning disability, you denied a huge part of yourself. Oh, the years wasted over feeling shame about something you couldn’t control. There are so many other aspects of you, but the disability was like a massive shadow covering that, because you perseverated forever!

Guess what, the people who matter won’t care.

Guess what, the people who do care don’t matter.

Turns out, it’s just one little part of you.

Turns, out it does not inhibit you from being great.

You will have good friends.

You are loved.

Soon those bullies won’t matter.

Soon you’ll feel strange for being so secretive for so long.

Your life will have purpose and meaning.

I love you.

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