Happy mother and joyful son sunset silhouette.

What It Takes to Parent a Child With a Disability


Sometimes I’m asked what it’s like to have a child with a disability. I’m praised for my parenting, lauded for my patience and my ability to care for my child. While I appreciate the sentiment, the truth is I’m no more of a super mom than anyone else. I stumble, I fall, I lose my temper sometimes. I struggle to find balance and order in our family’s life and schedule. My child is not all that different from any other child, not at the core anyway. And he’s certainly not hard to love.

I am a good mom; this I know and will take credit for. But I’m not special. I wasn’t given this child because I was strong enough, or extraordinary in some way. And let’s be very clear, my child is not a burden. He’s just a person; granted an incredible one, at least in my eyes. As parents, our job is to love, to encourage, to care for, to teach, and to provide for our children. This is what I do. In many ways, my life as a parent is not much different from anyone else’s.

I don’t want to take away credit where credit is due. There are so many hardworking parents of kids with disabilities out there, and they deserve to be acknowledged for moving the mountains they move to ensure their children flourish and thrive. Being a parent takes guts, not because of the children we have, but because of the world we live in. While we have come a long way, we still have far to go in the areas of accessibility, acceptance, and inclusion. Sometimes we have to fight a lot harder to have our children’s needs met. We have to learn things we never thought we’d know how to do. We often have to work harder at the things that usually come naturally in life.

If you’ve ever wondered if you’d be able to parent a child with a disability, I believe the answer is of course you could. You don’t think about it, you just do it. You take what is in front of you, and you figure it out. All it really takes is a willingness to learn, and an open heart and mind. If you can be a good parent, you can be a good parent to a child with a disability. If you’re at the beginning of your journey in the world of disability, rest assured, you’ve got this. I’m not going to tell you it will be easy, but it will be worth it.

I’m grateful. I’m thankful that I’m lucky enough to be Mom to a special kid. The things that make him special are not the things that make him different, but the things he brings to the world; kindness, innocence, love, determination, and so much more. Being a parent to a child with a disability is hard, but it’s also really quite simple. As trite as it sounds, all you really need is love. Oh, and a little backbone, and a lot of coffee.

We want to hear your story. Become a Mighty contributor here.

RELATED VIDEOS

Tag on suit that says "hard of hearing."

Why I Find Labels Powerful as a Person With a Disability


In my job, I am responsible for identifying and discussing disabilities in school children. In my personal life, I make it a point to name and discuss my disability when the occasion or need arises.

As policy at my job, a student’s disability is “confidential.” I understand why this policy is in place. Parents and students — especially those acclimating to a new eligibility — can be extra-sensitive to discussing it. Out of concern for their child’s well-being, parents may be reluctant to “give it a name” so to speak. They fear their child being “labeled.” Naming it makes it more real, more permanent and more open to negative connotations brought on not necessarily by the disability itself, but by other people’s reactions based on misinformation, misinterpretation and fear.

I understand. I do. As difficult as it can be though, I advocate for personal knowledge and discussion. I think it is only right that the person with a disability has a name for the symptoms they experience. You cannot “hide” the disability from the person experiencing it, no matter what the name. The “label” can answer so many questions about what is going on with the person’s own body and mind.

Knowledge — accurate knowledge — creates ownership. One of the best things I experienced was talking about my disability when I was as young as 8 years old.  I stood in front of other 8-year-olds and said I was born with things like “Goldenhar syndrome” and “Hydrocephalus due to aqueductal stenosis.” Was I a young Einstein? No. Did I actually understand what any of those terms meant with any medical specificity? Not really. But without those words, my teachers could think of me as “lazy” when I didn’t follow directions — when in actuality I didn’t hear them. My peers could think of me as weird and at fault because I didn’t speak like they did or move like them. Why should they include me if I wouldn’t conform?

Talking about it helped give me the words to advocate for myself when it came to my disability needs. I could correct the bullies not by giving them back the hate and fear they were giving me, but by granting them the words to make my disability comprehensible to them and part of their experience. My label also made it possible for me to ask for what I needed to learn or function with my teachers and other adults.

Labels can help people without disabilities as well. We humans by nature categorize as a way to determine how to act. I have a hearing impairment. I often don’t hear people when they are on my right side, as I have unilateral hearing. When strangers don’t know that, they may treat me as negatively as any other person who might “ignore” them, or just walk away insulted. These acts devalue me as a human being. Conversely, if they know I have a hearing impairment, they have a number of constructive options. They can position themselves on my “good side” before they speak to me. They can tap my shoulder to get my attention. These options show me I am respected.

In each of these scenarios, I am labeled. In the first scenario I am labeled “rude” and rejected. Both of us miss out on making a connection. We miss sharing our personalities and strengths because of a lack of knowledge on their part. But that is not their fault. It is mine. Often when I see people turn away from me like that, whether I realize why or not, I end up thinking “their loss” and am offended as well. They blame me for being rude when I wasn’t, and I blame them for acting unfairly even though they do not know about my disability.

In the second scenario, I am labeled “hard of hearing” and accommodated with understanding. We communicate effectively and share a mutual respect based on equity. Once we do that, we can move past my disability and share common interests and individual strengths — and even flaws. The second scenario requires both of us to stretch a little beyond what may commonly be our “comfort zone.” I have to understand that other people may not have the same experiences as I do. With that experience comes specific vocabulary. I have to give them the appropriate words to describe who I really am based on my experiences. They have to accept those words and understand them as a positive experience, potentially altering the world view they may have had before our encounter.

Words are one of our smallest forms of communication. Yet they have a lot of power. Words describe and categorize our world and experience. In and of themselves, words are neutral, objective. However, we have the power to impart meaning on words. We have the power to use our words for good — to unite, to create understanding, to make positive connections. The labels we use as people with disabilities are powerful. Sharing labels, using them with nondisabled people can create connections, understanding and respect. Not using them can create fear, misunderstandings and division.

It is up to each of us — disabled and nondisabled — to choose to use our words to empower or devalue. Which do you choose?

We want to hear your story. Become a Mighty contributor here.

 

two men hugging

How I've Built a Circle of Friends, Despite Social Anxiety, to Help Support Me


So, a little background on me. When I was a child I had a lot of mental/emotional challenges, learning challenges, and social challenges. By 13, I was already diagnosed as manic depressive, bipolar, and having gross motor and fine motor disabilities. I didn’t have any friends. There were really no answers for me for a very long time. They finally placed me in an outpatient day treatment program through an alternative school. This is where I finally found people who were more like me. I had a friend who saw through my awkwardness, pain and challenges to create a real friendship. I know this person was the first person to put me on the road to being better.

Over the years, I have worked with many professionals and various spiritual teachers. What has helped me the most though has been finding people to connect to.

There are times when my depression may prevent me from taking action. There are situations where my social anxiety prevents me from pursuing an opportunity. And there are just some habits I cannot develop because of how I function. I used to believe these challenges would prevent me from ever having a happy, successful life. I have also seen many people feel the same way about their challenges. Here’s the solution that worked for me.

I have found through having a large social circle with specific individuals as my friends that my weaknesses do not actually really matter. It started out many years ago, as I mentioned, with my first friend. We found we both loved words, and we used to have competitions to see if we knew the most obscure words. This led to my realizing and recognizing that while many people will attack my weaknesses, there were some who weren’t offended by them. This first person opened me enough to start seeking and finding other people. Because of my social anxiety, it was not an easy process.

Luckily, AOL had just become extremely popular (yes, I am old). The chat rooms provided a forum for me to connect with people through the anonymity of the internet. I typically opened a chat room called “Good Listener.” I started hearing other people’s stories and talking about my own. This sometimes led to me meeting up with other people in person. I really started to find people who were capable of being compassionate with my challenges. While it did not remove my social anxiety, it reduced it enough for me to be able to talk more to people, especially on the phone. This whole process occurred during my late teens and early 20s.

I had just started working as an office temp during these years. I found my personal challenges made it difficult to hold down a traditional job. As a result, I was drawn to studying to become a massage therapist. While the academic portion was a bit of a challenge, I found I was a strong kinesthetic learner, so learning massage was a good fit. While studying for massage, I learned about Reiki. (If you don’t know about Reiki, I highly recommend a little bit of research.) Anyway, as a result of my first Reiki attunement, I started having a number of synchronistic experiences, one of which led me to a spiritual store where I started taking classes with people on divination, meditation, healing and different traditions. Through having my positive experiences with people on AOL, I was able to be open to connecting with some of the people I met through these classes.

The more I connected with people the more I started seeing how unique each and every person is. Over the years since then, I have learned that while I cannot do many things, the one thing I do well is love and appreciate those whom I connect with. I have found since a lot people are not used to gratitude and appreciation, that is often enough for them to want to support me. The important part of this practice is to not rely on just a few people. When someone feels they are the only person, or they are one of the only people to support you, it can become too much.

There are actually people who are afraid of co-dependent relationships. Some are even so afraid that they believe any dependent relationship is automatically a co-dependent relationship. We would not have the word “co-dependent” if being dependent was automatically that. The way I avoid co-dependent relationships is in creating a larger quantity of friends. It is almost like realizing if I needed help carrying 100 pounds of something, I could ask four people to carry 25 pounds or I could ask 25 people to carry 4 pounds. Having the 25 people means no one ends up feeling like I am too much weight. I do not expect or demand that people help me. I request and ask for support but recognize it is not anyone’s obligation.

The other thing I have realized in creating positively dependent relationships is I must accurately assess the skills of the person whom I am asking for help. I used to believe if someone loved me they could help me. At least for me, this is not true. I need people with a certain type of intelligence and/or various skills to support my path. Just because someone loves me does not automatically mean they are skilled in the ways I need. Fortunately, my work has led me to interacting with a wide variety of people.

I wrote this article because I believe it is important to teach people that when they build the right community, even though they experience challenges, their life does not need to be a challenge. I recognize this is only one possible solution, but it is a solution that most people are never educated about.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by DAJ

Students raising their hands in classroom, with teacher at the front of the class in front of the chalkboard

Why I Stay as a Special Education Teacher in the DeVos Era of Education


With the dawn of the Betsy DeVos era of education, it seems to me like my profession, my colleagues and my students are all working in a hostile environment. Hostility can start with speech. Based on her own words, I feel Betsy DeVos cannot be relied on to uphold the special education laws that are needed to guarantee the rights of students with disabilities a free and appropriate public education.

I don’t know if she will be successful or if the outrage of parents, teachers, advocates and people with disabilities will be strong enough to stop what I feel is a backslide into prehistoric times of special education history where students were denied a basic education and sequestered away from places of education.

But I do know why I stay.

I stay because I want my students to know that someone welcomes them.

I stay to show my students that they matter enough to someone to put them first.

I stay because I want them to know that with hard work on their part and understanding on mine, they can achieve their goals.

I stay to show them I care if they are bullied or overlooked, and I will stand up for them.

I stay to show them they are more than the sum of their test scores, and I will fight to educate the whole child.

I stay to build on their strengths, not highlight their weaknesses.

I stay to give them opportunities to love learning and experience success.

I stay to show them how to work with their disabilities — not deny them — to be successful.

I stay to show them that perseverance does matter and will show results that will be revealed in time.

Despite Betsy DeVos, despite the hostile environment, despite the ambivalence and paucity shown towards my students, I stay to stand in front of what I believe is the impending decline so my students are supported.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Comstock

image from disney movie moana

5 Things I've Learned From Disney as an Adult With Disabilities


I’m a Disney girl. I’ve always been a Disney girl. I grew up watching “The Little Mermaid” and “Cinderella.” When asked what I would do if I could do anything for my Make-A-Wish trip, I said meet Mickey Mouse. My best friend and I still go see most of the new Disney movies in the theater. It’s funny because I relate to and appreciate the movies differently as an adult. As a kid, I liked the stories and music. As an adult, they have deeper meanings.

Here are five things Disney has taught me as an adult living with various disabilities:

1. It’s OK to be sad. –“Inside Out”

It might sound silly, but one reason I love “Inside Out” is because it shows me that Sadness is just as important as Joy. I have a tendency to be more like Joy, always looking at the bright side. But as an adult with a disability it can be hard to see your peers do things that you can’t or haven’t done yet. Things related to working, friendships / relationships, and becoming independent from your family. Figuring out this stuff is hard enough when you have a disability or chronic illness. But, when you see your friends and peers doing them “without any trouble” it can be hard. It’s OK to feel sad, scared or frustrated… feeling those emotions is just as important as being happy.


2. Dare to do things that scare you. “Finding Dory”

I love this movie so much. One scene stands out for me, though. It is when Dory wants to go through the pipes to find her parents in quarantine. She’s scared because she was given directions by two crabs but they aren’t able to go with her. “I can’t be somewhere where I have nobody to help me.” I have low vision (totally relate to Destiny) and it can be scary for me to go places by myself. I get nervous in unfamiliar places because I worry about things like going off curbs and down steps in my power wheelchair. But like Dory, sometimes you have to do things that scare you. Be brave. Don’t limit yourself by being too scared to do something on your own (within reason).

3. Never stop dreaming. –1950 animated “Cinderella”

Simple enough. Never stop dreaming and don’t put limits on yourself. If you want to do something, try as hard as you can to make it a reality. I say “try as hard as you can” because I get it. Working towards certain goals when you have a disability can be filled with so many extra considerations and complications. You may not be able to achieve all of your goals, or your goals may change, but the key is to never stop dreaming.

4. Have courage and be kind. –2015 live-action Cinderella

This is one of my favorite sayings now. I even bought a sparkly decal with this saying for my wheelchair. I feel like this has always been part of my personality, but I never really thought about it. Having courage when you have a disability can mean many different things. For me, it has to do with my outlook and how I approach various situations. It’s kind of a combination of everything I’ve described. Understanding that there are going to be tough days, but there are also good days. It takes courage to keep moving forward despite all the obstacles that can go along with a disability.

Being kind is a good idea for anyone, but it can be especially difficult for someone with a disability when faced with certain situations. For example, staring. Instead of getting angry or frustrated, I simply smile. I wave to curious kids. I try to remember that most of the time people are not trying to be mean or rude. I approach these situations as learning opportunities. I want to be friendly and educate them. I’m not perfect though, and have definitely had days when this kind of thing gets really old. I know sometimes you need to speak up and and make your frustration known. But on the whole, having courage and being kind is the way to go.

5. Appreciate both the good and bad times. –“Moana”

I wasn’t sure about “Moana” at first but now I love it. There’s one particular line that stuck out to me after re-watching it a few times. Moana’s grandma tells her “Sometimes the world seems against you / The journey may leave a scar / But scars can heal and reveal / Just where you are…” I like this because it’s so true. I have physical scars from surgeries and IVs. While I can’t really see them (they’re on my feet, behind my knees and on my back) knowing they’re there is enough.

If I really think about it there are also emotional scars. There isn’t a specific incident or event that sticks out. I think it’s more subtle, from a lifetime of having to “fight.” Whether that’s through illnesses, physical therapy, succeeding in school, and now work, it’s just a fact. I have to work harder to do what I want. There are also the effects of feeling left out at times, like I alluded to earlier. It all adds up. The point is to try to appreciate both the good and bad times.

So there you have it, five things Disney has taught me over the last few years. Some may say Disney movies are just for kids, but I disagree. You’re never too old to learn something from them.

We want to hear your story. Become a Mighty contributor here.

Images via Giphy.

right side of a woman's face

I Am the Face of Disability, Even if I Don't 'Look' Disabled


Occasionally, friends, I get tired. I’m not referring to the fatigue that is common with my diagnoses. I am referring to the kind of mind-draining tiredness that comes from fighting the same battle. I am 32 years old and fully disabled. I have a handicap placard that hangs in my car. I have no shame in either of those facts, because there is absolutely nothing I can do to change my condition. However, I’m growing tired of defending my status based solely on the fact that I don’t look quite sick enough to fit others’ mental picture of disability.

So, I’m saying this now on behalf of myself and the entire disabled community. Every disabled person is the face of disability. Whether or not a person uses a mobility aid does not determine their disabled status. An illness that physically alters appearance is not required for a disability to exist.

 

Sometimes the face of disability is found at the hospital or in a treatment center. Disabled people often have complex medical needs that must be addressed in those types of settings. However, there are other times that the disabled go bowling or to a zoo. Just because a person has physical limitations does not mean they have abandoned all hope of ever having fun again.

Today, my car was parked in handicapped parking. Today, it was necessary that I utilize the aid of my placard, because I could not have completed my task successfully without accessible parking. However, when I returned to my car, I felt embarrassed. A couple in the car next to me stopped and stared. I immediately wondered if I was walking slowly enough to meet their approval. I wondered if they noticed I limp on my right side. My hip has started dislocating again, and it’s making me a bit extra cautious when I bear weight on my right leg.

Then, once I was in the car – still feeling the weight of their gaze as they craned their necks to inspect my disability placard – I felt ridiculous. I do not have to prove my disability to anyone outside the medical community. I did not ask to have a chronic illness. I did not choose to have joints that frequently dislocate. I didn’t special order my aneurysms because I thought they sounded fun. Why am I acting ashamed of something I cannot help?

I’m over it. I am tired of feeling embarrassed about something over which I have no control. I refuse to apologize for not looking “sick enough” for some people. I am the face of disability when I am standing and cheering for my favorite team, and I am the face of disability when I am sitting in the hospital waiting for more tests and procedures.

The encouraging part of this proclamation is that I know I’m not alone. There are so many other faces of disability throughout our world – faces who are sick and exhausted and frustrated. But also, faces who smile and laugh until their sides hurt. Let me encourage you to show your face. The face of disability looks like all of us who were dealt a difficult hand by life and still manage to smile.

If you want, join me in sharing your selfie on Twitter and Instagram with the hashtag #iamthefaceofdisability. The world needs to see us, because staying hidden is too exhausting.

Follow this journey on Crazy Chronic Life.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via utkamandarinka.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.