college essay about special needs sibling

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What i learned from having a sibling with special needs.

In 12th grade, as I was applying for colleges, I was asked to write a brief essay about a person who has had a profound impact on my life. I did not hesitate for even a moment before deciding to write about my older brother, Taylor. After all, we have remained almost inseparable for my entire life and have experienced all of life’s ups and downs together. He was my first friend, my greatest role model, and actually there’s one more thing I forgot to mention. He has Down syndrome (you can read more about what DS is here ).

I’m not asking you to feel bad for him, much less me or my family. Instead, I ask you to open your mind to realize the incredible impact that individuals with special needs can have on the world around them. That being said, here is the essay I wrote for my college apps:

“Throughout a person’s life, they come in contact with multitudes upon multitudes of other people. Most of them have very little impact on the person’s life, some remain near to the person but do not impact their life in a profound way, and a handful change the person’s life forever. I have been fortunate enough to know one person in particular that has had an unquantifiable positive impact on my life. This person is my older brother, Taylor, and it is hard to imagine what my life would be like today had we been born into any other set of circumstances.

The majority of the influence Taylor has had on my life stems from the fact that he has Down syndrome. The most prominent feature of Down syndrome is mental retardation; but there are also a plethora of associated health problems. Thusly, Taylor may as well have lived in the hospital until age three. I was too young to remember most of this; but as a child I do recall many late-night trips to the emergency room for a barking cough called croup and two near-fatal bouts of pneumonia in his teenage years. He took on each of these challenges with phenomenal bravery, which is evidence of his inspirational tenacity.

Another reason that Taylor inspires me is that he defies all of the odds. When he was born, the doctors said he would never be able to talk. Sure enough, after years of speech therapy (not to mention the physical and occupational therapy required to master necessary skills for living that come easily to most) , he is talking up a storm. Not only this, but he recently graduated high school with honors and is now attending a vocational school for young adults with special needs. He also plays basketball and softball, plans to spend his spring break in Florida with his friends from basketball, and continues to have as much fun as he can, regardless of what others think.

The last and perhaps foremost reason that Taylor has impacted me so is his firm grasp on the concept of unconditional love. This is not something he has learned, but something that he has inherently known better than anyone else I have come in contact with. He just does not understand certain social nuances; but what he does understand are the simplest forms of human emotion. Nearly everyone he has met has fallen in love with him; and the reverse is true most of the time. Taylor just makes me wish that everyone else could let go of their pride and learn to love each other unconditionally. The world would be a better place.

Growing up with Taylor has taught me to be more understanding. It has also taught me never to take anything for granted. Additionally, being immersed in the special needs community throughout my life has made me into a special needs advocate. I will admit that growing up with Taylor has been challenging at times; but I would not have traded it for anything.”

Looking back, everything in this essay still holds true. Taylor is still the single most loving person I have ever met, and still continues to shatter my expectations with what he is capable of. Once a shy child with poor verbal skills, he is now following his dream of becoming a chef at a culinary school for adults with special needs and even did a cooking segment on the most major local news channel. He has become immeasurably more confident by volunteering at a local hospital and working at the farmer’s market, so much so that people don’t believe me when I tell them the doctors said he may never be verbal.

I have yet to meet a person (or a dog for that matter—the man loves dogs more than anyone I have ever met) who isn’t enchanted by his shamelessly loving demeanor and positive attitude. I am often taken aback by the insight that someone who allegedly has the mental capacity of a second grader offers about the world, in complete disbelief that such a unique individual has come to be out of sheer coincidence. Most of all, however, I am convinced that he loves me more than any one person has ever loved me. It makes me feel like the luckiest girl in the world to be adored by my big brother, and while I would never wish something like Down syndrome on someone, I am so glad that I have been fortunate enough to have such an amazing person in my life.

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25 beatles lyrics: your go-to guide for every situation, the best lines from the fab four.

For as long as I can remember, I have been listening to The Beatles. Every year, my mom would appropriately blast “Birthday” on anyone’s birthday. I knew all of the words to “Back In The U.S.S.R” by the time I was 5 (Even though I had no idea what or where the U.S.S.R was). I grew up with John, Paul, George, and Ringo instead Justin, JC, Joey, Chris and Lance (I had to google N*SYNC to remember their names). The highlight of my short life was Paul McCartney in concert twice. I’m not someone to “fangirl” but those days I fangirled hard. The music of The Beatles has gotten me through everything. Their songs have brought me more joy, peace, and comfort. I can listen to them in any situation and find what I need. Here are the best lyrics from The Beatles for every and any occasion.

And in the end, the love you take is equal to the love you make

The End- Abbey Road, 1969

The sun is up, the sky is blue, it's beautiful and so are you

Dear Prudence- The White Album, 1968

Love is old, love is new, love is all, love is you

Because- Abbey Road, 1969

There's nowhere you can be that isn't where you're meant to be

All You Need Is Love, 1967

Life is very short, and there's no time for fussing and fighting, my friend

We Can Work It Out- Rubber Soul, 1965

He say, "I know you, you know me", One thing I can tell you is you got to be free

Come Together- Abbey Road, 1969

Oh please, say to me, You'll let me be your man. And please say to me, You'll let me hold your hand

I Wanna Hold Your Hand- Meet The Beatles!, 1964

It was twenty years ago today, Sgt. Pepper taught the band to play. They've been going in and out of style, but they're guaranteed to raise a smile

Sgt. Pepper's Lonely Hearts Club Band-1967

Living is easy with eyes closed, misunderstanding all you see

Strawberry Fields Forever- Magical Mystery Tour, 1967

Can you hear me? When it rains and shine, it's just a state of mind

Rain- Paperback Writer "B" side, 1966

Little darling, it's been long cold lonely winter. Little darling, it feels like years since it' s been here. Here comes the sun, Here comes the sun, and I say it's alright

Here Comes The Sun- Abbey Road, 1969

We danced through the night and we held each other tight, and before too long I fell in love with her. Now, I'll never dance with another when I saw her standing there

Saw Her Standing There- Please Please Me, 1963

I love you, I love you, I love you, that's all I want to say

Michelle- Rubber Soul, 1965

You say you want a revolution. Well you know, we all want to change the world

Revolution- The Beatles, 1968

All the lonely people, where do they all come from. All the lonely people, where do they all belong

Eleanor Rigby- Revolver, 1966

Oh, I get by with a little help from my friends

With A Little Help From My Friends- Sgt. Pepper's Lonely Hearts Club Band, 1967

Hey Jude, don't make it bad. Take a sad song and make it better

Hey Jude, 1968

Yesterday, all my troubles seemed so far away. Now it looks as though they're here to stay. Oh, I believe in yesterday

Yesterday- Help!, 1965

And when the brokenhearted people, living in the world agree, there will be an answer, let it be.

Let It Be- Let It Be, 1970

And anytime you feel the pain, Hey Jude, refrain. Don't carry the world upon your shoulders

I'll give you all i got to give if you say you'll love me too. i may not have a lot to give but what i got i'll give to you. i don't care too much for money. money can't buy me love.

Can't Buy Me Love- A Hard Day's Night, 1964

All you need is love, love is all you need

All You Need Is Love- Magical Mystery Tour, 1967

Whisper words of wisdom, let it be

Blackbird singing in the dead of night, take these broken wings and learn to fly. all your life, you were only waiting for this moment to arise.

Blackbird- The White Album, 1968

Though I know I'll never lose affection, for people and things that went before. I know I'll often stop and think about them. In my life, I love you more

In My Life- Rubber Soul, 1965

While these are my 25 favorites, there are quite literally 1000s that could have been included. The Beatles' body of work is massive and there is something for everyone. If you have been living under a rock and haven't discovered the Fab Four, you have to get musically educated. Stream them on Spotify, find them on iTunes or even buy a CD or record (Yes, those still exist!). I would suggest starting with 1, which is a collection of most of their #1 songs, or the 1968 White Album. Give them chance and you'll never look back.

14 Invisible Activities: Unleash Your Inner Ghost!

Obviously the best superpower..

The best superpower ever? Being invisible of course. Imagine just being able to go from seen to unseen on a dime. Who wouldn't want to have the opportunity to be invisible? Superman and Batman have nothing on being invisible with their superhero abilities. Here are some things that you could do while being invisible, because being invisible can benefit your social life too.

1. "Haunt" your friends.

Follow them into their house and cause a ruckus.

2. Sneak into movie theaters.

Going to the cinema alone is good for your mental health , says science

Considering that the monthly cost of subscribing to a media-streaming service like Netflix is oft...

Free movies...what else to I have to say?

3. Sneak into the pantry and grab a snack without judgment.

Late night snacks all you want? Duh.

4. Reenact "Hollow Man" and play Kevin Bacon.

America's favorite son? And feel what it's like to be in a MTV Movie Award nominated film? Sign me up.

5. Wear a mask and pretend to be a floating head.

Just another way to spook your friends in case you wanted to.

6. Hold objects so they'll "float."

"Oh no! A floating jar of peanut butter."

7. Win every game of hide-and-seek.

Just stand out in the open and you'll win.

8. Eat some food as people will watch it disappear.

Even everyday activities can be funny.

9. Go around pantsing your friends.

Even pranks can be done; not everything can be good.

10. Not have perfect attendance.

You'll say here, but they won't see you...

11. Avoid anyone you don't want to see.

Whether it's an ex or someone you hate, just use your invisibility to slip out of the situation.

12. Avoid responsibilities.

Chores? Invisible. People asking about social life? Invisible. Family being rude? Boom, invisible.

13. Be an expert on ding-dong-ditch.

Never get caught and have the adrenaline rush? I'm down.

14. Brag about being invisible.

Be the envy of the town.

But don't, I repeat, don't go in a locker room. Don't be a pervert with your power. No one likes a Peeping Tom.

Good luck, folks.

19 Lessons I'll Never Forget from Growing Up In a Small Town

There have been many lessons learned..

Small towns certainly have their pros and cons. Many people who grow up in small towns find themselves counting the days until they get to escape their roots and plant new ones in bigger, "better" places. And that's fine. I'd be lying if I said I hadn't thought those same thoughts before too. We all have, but they say it's important to remember where you came from. When I think about where I come from, I can't help having an overwhelming feeling of gratitude for my roots. Being from a small town has taught me so many important lessons that I will carry with me for the rest of my life.

1. The importance of traditions.

Sometimes traditions seem like a silly thing, but the fact of it is that it's part of who you are. You grew up this way and, more than likely, so did your parents. It is something that is part of your family history and that is more important than anything.

2. How to be thankful for family and friends.

No matter how many times they get on your nerves or make you mad, they are the ones who will always be there and you should never take that for granted.

3. How to give back.

When tragedy strikes in a small town, everyone feels obligated to help out because, whether directly or indirectly, it affects you too. It is easy in a bigger city to be able to disconnect from certain problems. But in a small town those problems affect everyone.

4. What the word "community" really means.

Along the same lines as #3, everyone is always ready and willing to lend a helping hand when you need one in a small town and to me that is the true meaning of community. It's working together to build a better atmosphere, being there to raise each other up, build each other up, and pick each other up when someone is in need. A small town community is full of endless support whether it be after a tragedy or at a hometown sports game. Everyone shows up to show their support.

5. That it isn't about the destination, but the journey.

People say this to others all the time, but it takes on a whole new meaning in a small town. It is true that life is about the journey, but when you're from a small town, you know it's about the journey because the journey probably takes longer than you spend at the destination. Everything is so far away that it is totally normal to spend a couple hours in the car on your way to some form of entertainment. And most of the time, you're gonna have as many, if not more, memories and laughs on the journey than at the destination.

6. The consequences of making bad choices.

Word travels fast in a small town, so don't think you're gonna get away with anything. In fact, your parents probably know what you did before you even have a chance to get home and tell them. And forget about being scared of what your teacher, principle, or other authority figure is going to do, you're more afraid of what your parents are gonna do when you get home.

7. To trust people, until you have a reason not to.

Everyone deserves a chance. Most people don't have ill-intentions and you can't live your life guarding against every one else just because a few people in your life have betrayed your trust.

8. To be welcoming and accepting of everyone.

While small towns are not always extremely diverse, they do contain people with a lot of different stories, struggle, and backgrounds. In a small town, it is pretty hard to exclude anyone because of who they are or what they come from because there aren't many people to choose from. A small town teaches you that just because someone isn't the same as you, doesn't mean you can't be great friends.

9. How to be my own, individual person.

In a small town, you learn that it's okay to be who you are and do your own thing. You learn that confidence isn't how beautiful you are or how much money you have, it's who you are on the inside.

10. How to work for what I want.

Nothing comes easy in life. They always say "gardens don't grow overnight" and if you're from a small town you know this both figuratively and literally. You certainly know gardens don't grow overnight because you've worked in a garden or two. But you also know that to get to the place you want to be in life it takes work and effort. It doesn't just happen because you want it to.

11. How to be great at giving directions.

If you're from a small town, you know that you will probably only meet a handful of people in your life who ACTUALLY know where your town is. And forget about the people who accidentally enter into your town because of google maps. You've gotten really good at giving them directions right back to the interstate.

12. How to be humble .

My small town has definitely taught me how to be humble. It isn't always about you, and anyone who grows up in a small town knows that. Everyone gets their moment in the spotlight, and since there's so few of us, we're probably best friends with everyone so we are as excited when they get their moment of fame as we are when we get ours.

13. To be well-rounded.

Going to a small town high school definitely made me well-rounded. There isn't enough kids in the school to fill up all the clubs and sports teams individually so be ready to be a part of them all.

14. How to be great at conflict resolution.

In a small town, good luck holding a grudge. In a bigger city you can just avoid a person you don't like or who you've had problems with. But not in a small town. You better resolve the issue fast because you're bound to see them at least 5 times a week.

15. The beauty of getting outside and exploring.

One of my favorite things about growing up in a rural area was being able to go outside and go exploring and not have to worry about being in danger. There is nothing more exciting then finding a new place somewhere in town or in the woods and just spending time there enjoying the natural beauty around you.

16. To be prepared for anything.

You never know what may happen. If you get a flat tire, you better know how to change it yourself because you never know if you will be able to get ahold of someone else to come fix it. Mechanics might be too busy , or more than likely you won't even have enough cell service to call one.

17. That you don't always have to do it alone.

It's okay to ask for help. One thing I realized when I moved away from my town for college, was how much my town has taught me that I could ask for help is I needed it. I got into a couple situations outside of my town where I couldn't find anyone to help me and found myself thinking, if I was in my town there would be tons of people ready to help me. And even though I couldn't find anyone to help, you better believe I wasn't afraid to ask.

18. How to be creative.

When you're at least an hour away from normal forms of entertainment such as movie theaters and malls, you learn to get real creative in entertaining yourself. Whether it be a night looking at the stars in the bed of a pickup truck or having a movie marathon in a blanket fort at home, you know how to make your own good time.

19. To brush off gossip.

It's all about knowing the person you are and not letting others influence your opinion of yourself. In small towns, there is plenty of gossip. But as long as you know who you really are, it will always blow over.

Grateful Beyond Words: A Letter to My Inspiration

I have never been so thankful to know you..

I can't say "thank you" enough to express how grateful I am for you coming into my life. You have made such a huge impact on my life. I would not be the person I am today without you and I know that you will keep inspiring me to become an even better version of myself.

You have taught me that you don't always have to strong. You are allowed to break down as long as you pick yourself back up and keep moving forward. When life had you at your worst moments, you allowed your friends to be there for you and to help you. You let them in and they helped pick you up. Even in your darkest hour you showed so much strength. I know that you don't believe in yourself as much as you should but you are unbelievably strong and capable of anything you set your mind to.

Your passion to make a difference in the world is unbelievable. You put your heart and soul into your endeavors and surpass any personal goal you could have set. Watching you do what you love and watching you make a difference in the lives of others is an incredible experience. The way your face lights up when you finally realize what you have accomplished is breathtaking and I hope that one day I can have just as much passion you have.

SEE MORE: A Letter To My Best Friend On Her Birthday

The love you have for your family is outstanding. Watching you interact with loved ones just makes me smile . You are so comfortable and you are yourself. I see the way you smile when you are around family and I wish I could see you smile like this everyday. You love with all your heart and this quality is something I wished I possessed.

You inspire me to be the best version of myself. I look up to you. I feel that more people should strive to have the strength and passion that you exemplify in everyday life.You may be stubborn at points but when you really need help you let others in, which shows strength in itself. I have never been more proud to know someone and to call someone my role model. You have taught me so many things and I want to thank you. Thank you for inspiring me in life. Thank you for making me want to be a better person.

Waitlisted for a College Class? Here's What to Do!

Dealing with the inevitable realities of college life..

Course registration at college can be a big hassle and is almost never talked about. Classes you want to take fill up before you get a chance to register. You might change your mind about a class you want to take and must struggle to find another class to fit in the same time period. You also have to make sure no classes clash by time. Like I said, it's a big hassle.

This semester, I was waitlisted for two classes. Most people in this situation, especially first years, freak out because they don't know what to do. Here is what you should do when this happens.

Don't freak out

This is a rule you should continue to follow no matter what you do in life, but is especially helpful in this situation.

Email the professor

Around this time, professors are getting flooded with requests from students wanting to get into full classes. This doesn't mean you shouldn't burden them with your email; it means they are expecting interested students to email them. Send a short, concise message telling them that you are interested in the class and ask if there would be any chance for you to get in.

Attend the first class

Often, the advice professors will give you when they reply to your email is to attend the first class. The first class isn't the most important class in terms of what will be taught. However, attending the first class means you are serious about taking the course and aren't going to give up on it.

Keep attending class

Every student is in the same position as you are. They registered for more classes than they want to take and are "shopping." For the first couple of weeks, you can drop or add classes as you please, which means that classes that were once full will have spaces. If you keep attending class and keep up with assignments, odds are that you will have priority. Professors give preference to people who need the class for a major and then from higher to lower class year (senior to freshman).

Have a backup plan

For two weeks, or until I find out whether I get into my waitlisted class, I will be attending more than the usual number of classes. This is so that if I don't get into my waitlisted class, I won't have a credit shortage and I won't have to fall back in my backup class. Chances are that enough people will drop the class, especially if it is very difficult like computer science, and you will have a chance. In popular classes like art and psychology, odds are you probably won't get in, so prepare for that.

Remember that everything works out at the end

Life is full of surprises. So what if you didn't get into the class you wanted? Your life obviously has something else in store for you. It's your job to make sure you make the best out of what you have.

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The Emotional Impact of being a Sibling to a Brother/Sister with a Disability

Career Day at an elementary school ignited my childhood feelings of growing up with my brother, Nick, who has a disability:

I recently spoke before 2nd-5th grade students during a career day event at Estes Elementary School.  Whenever I speak about my career path before audiences I naturally share how having a brother with a disability provided me with my drive and purpose.   

After my presentation, a little girl came up to me and stated in her little 2nd grade voice, “I have a brother with Autism”.

I said to her, “You do?  Then welcome to my special club young lady, because we are the cool sisters that God picked to be their siblings”.

She responded in an unsteady and scared little voice, “Yes, but I feel sorry for my brother”.

I kneeled down to look directly in her brown eyes that were starting to fill with tears and said, “He doesn’t want you to feel sorry for him, he wants you to be his door”.

She looked at me strangely. I wasn’t sure if I could say the right things to this 2nd grader in the moment I had, because I could hear her teacher encouraging everyone to get in line to go to the next presenter in another classroom. I said, “Yes a door! During life be that one person who opens the door of possibilities, the door to love, the door to friendships, the door to something he needs, but when you open that door don’t be afraid to walk through it first and take him with you. But most importantly, don’t forget to be his sister.”  

For obvious reasons , the content of this subject hits so close to home and my experiences and insights as they relate to siblings are sensitive to me. I want to highlight these emotions for my readers in a series of blogs, so I can dig deeper and explore those feelings.  My hope in writing about this subject to validate and bring awareness to those siblings and their families that these emotions are normal and you are not alone. So, check back and continue to follow the series as I explore the emotions and thoughts siblings of individuals with a disability may experience.  

The 5 Emotions a Sibling Experiences are highlighted below.  Check back for a detailed Blog on each of these emotions…..

Guilt- because they have a disability and you do not.  

Jealousy- fighting for parents’ attention is a child thing, but maybe a little more magnified when their sibling has a disability. Along with thinking that their sibling gets the “easy” way out of things such as chores, school work and other responsibilities and we the “typical” developing sibling will always be held to higher expectations.

Embarrassment- it’s not the disability itself that is embarrassing but situations that come along with it. We might always be scanning the room to see if others  are watching or noticing that we do things “different”.

Hate- sometimes it’s just needing to hate the disability, not the person

The 3 P’s (Pride, Protective, Possession)

Pride- that God chose them to be their sibling and the realization that their sibling will teach them more about life than anything.

Protective – becoming the shield that blocks and pushes back the negativity in the world  associated with disabilities.

Possession- the feeling that no one else can support or love their siblings like they can.

Updated December 8th, 2019: Due to the amount of people who have reached ou t asking for more insight since this post, I have started to write a children’s chapter book. It will be based on myself meeting a friend in 6th who also has a brother with a disability. We share with our readers the emotional stories and connections we share over having brothers with disabilities ! Please comment or sign up for email contact in order to be notified when the book is released! Thank you for thesupport

My Imprint:

Parent takeaway: when your child (who doesn’t have the disability) ask you “why” they can’t go on a trip to Disney or “why” does their brother/sister have to come along…don’t let your first response be: you know why, your brother/sister can’t because they have “insert in their disability”. Let your answer be different. Don’t put the blame on the disability because you are giving a reason to resent the disability itself. Allow your children without disabilities to have the feelings and don’t shame them during their “cycle” of acceptance.  Remember that moment when the doctor first told you about the diagnosis and the emotions you felt? As a sibling we go through those same emotions, but in a gradual way because we are young when we start to notice the differences in our siblings, so the cycles of emotions are delayed and can re-surface at times throughout our development of life.

Teacher takeaway: recognize when your student who is a sibling to someone with a disability seems distant.  There will be times of social isolation, whether it is from guilt or just needing their “me” time.  Just notice and show some extra attention. Also recognize when behaviors or learning styles may mimic that of their sibling.  For example: I had to have speech classes when I was in elementary school because I talked like my brother. He was my closest friend so I would mimic his speech and styles.  

Community Member takeaway: don’t assume siblings know everything about the disability.  Don’t overwhelm them with your questions to help you understand, because they may be cycling through the emotions above and trying to understand it themselves.  There is timing for this, but allow them to just be a kid with you. Allow them the opportunity to have a break from home life, and being the understanding sibling. Provide them with a different outlet, mine was softball.    

Did you know I had podcast? The intention of the podcast is to share “pieces of me” in the hopes it impacts others’ journeys.  Everything from growing up with a brother with a disability,  teaching individuals with disabilities, empowering women, learning to lead, coaching, being a mom (especially a boy mom), to fighting through the thoughts of self-doubt. Each will be a piece of me intended to create a better piece within you.  

Follow me on Instagram to connect and come along on this journey with me! 

Take a listen! Links are below for all your favorite podcast platforms!

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44 thoughts on “ The Emotional Impact of being a Sibling to a Brother/Sister with a Disability ”

Wow, its so great to have someone else that can relate! I’m excited about this blog! Thank you for sharing!

If you are interested in a book by a sibling of a person with autism, try “Precisely John A Journey of Love, Laughter, and Faith by Catherine Miller on Amazon

Preach it sister!! This is so easy to relate too!!

Thanks for sharing this. Growing up with a sibling with a disability I didn’t always feel like anyone could understand the complex and mixed emotions I felt.

I do. The emotions have run the gamut. My brother died many many yrs ago and I am still dealing with all the hurt and pain. I try not to think about my brother too much. I think kids need therapy, to understand their own the emotions.

This is an amazing article and story. I will be sharing this with my older daughter who has a younger sibling with a disability. She is the best big sister ever and is so proud and protective of her little sister. We always try to understand her needs and emotions as well and make special time for her to help with the necessary attention her sister receives.

Thank you. This topic is so important These siblings so easily get cought up in feeling like the other child.

My daughter has PTSD and anxiety from her sister’s violent behaviors, which are a direct result of her disability. As a result, my daughter has significant control issues and doesn’t like people in her personal space. She does not do well surprises or kids who don’t follow rules. I wish her teachers would understand this. They have done more damage by failing to understand and support her. Your blog is so refreshing. It should be mandatory reading to all educators and administrators.

This sounds a lot like my daughter. Specifically the control issues, personal space, and other kids not following rules. We are currently looking for a counselor or therapist to talk to because she just seems like a very unhappy child and we don’t know how to help her. Has your child been to therapy and if so has it helped?

My daughter wrote a comic book about this: http://Www.adventuresfrommyworld.com

The effect on a younger twin, and 4 other siblings, i have been doing things so wrong, thank you for the insight, i never actually thought that their siblings feel this way, but it adds up now, 10 years. i’m blown away with this information.

This is comment alone is the exact reason I wanted to share my blog. Thank you for this. It helps me to know my purpose as I move forward, because starting this was hard but it was the intention to help others. You have motivated me more than you could realize to keep going . Follow the blog there are more articles in this series that do in detail about each emotion. The guilt article is already out, next week another one will be release . Thank you

Degrees of disability and caregiving along with parent’s ability to manage stress influence outcomes for sibs/family

I know my younger son feels these things. I have seen them. My issue is how to address them. He is the sweetest kid, and he and his brother seem to have a pretty typical relationship; except my 13 year old is the big brother to my 15 year old. My younger son, shutters his more complicated feelings and doesn’t like to talk about any of them. He has a great poker face to everyone but me, however he won’t talk to me either. I’m worried that there will be lasting negative effects to him bottling everything up.

I feel the same. My younger son 14 yr old has a big brother 19 yrs old with a disability. He has become a very responsible boy since he had to share my responsibilities. He too doesn’t talk about his emotions. I too feel he has it all bottled up inside of him. Though they share a very good relationship but he has become very sensitive . I just want him to feel free and convey the same to him but it doesn’t work

I am an elementary school counselor and a grandmother of a Downs Syndrome grandson. Your article sparked an idea that I would like to have a focus group for these students who have a sibling with a disability. I will be following your blog for ideas!! Thanks!

There is a lot on Sibshops , it’s a national thing as well so you can find activities associated with forming a group. When I was a school teacher I would host Sibshops for those siblings who had a brother/sister with a disability. Let me know how I can help support or give ideas. Love the follow and share!

Sibshop for your school district can help so many students and families in your area. Highly recommended it. It has helped with normalization for all of us.

We have a”Well Sibling Squad” in our area. I am still looking for resources for that sibling who has burdened these emotions for so long then loses her sibling, if someone has resources…

I am not sure what resources are out there but if I could be of some help please let me know .

This is something that is constantly on my mind as a parent to two special needs children and one healthy child. My daughter has two younger brothers on oxygen due to a rare lung disease. I always try to be cautious of what I say regarding why we can’t do things and why things are different for us. I pray every day that I’m doing the right thing for all my children. Being a parent is hard and being a special needs parent is even harder.

Your daughter will be amazing!! I am 46 years old and grew up the sibling of two severely disabled twins, 11 months younger than me. I have such a greater tolerance, compassion, sense of empathy, and strength for having grown up with two very special guys!

I always look at my older neurotypical daughter and wonder what her thoughts are about her brother. She is starting to get expressive about it and ask more about him. I will be reading this article to her today. Thank you for your perspective.

Every last word of this article is true. My sibling, my oldest sister, had typhoid fever at the age of 23 months, and was left partially paralyzed and stopped growing mentally at the age of about two years. This was in 1929, before the advent of so much help for such children. My parents took special care and she lived to be nearly 67 years old, all but 12 years at home! I and my other three siblings, all brothers, learned the greatest lessons of life from our June – the biggest one being unconditional love. I saw unselfish parents, older brothers who tenderly cared, and we all learned the value the important things and not the things the world loves. Beautifully written! Thank you.

I am 4yrs older than my brother Francis who was born with Cerebal Palsy , and I can remember as we were growing up, we were close because of our ages so we always doing something together, and I can honestly say, I never in my mind saw him any different than me, sure he could not do some of the things I did, but he sure the hell tried to do them and sometimes even did them, his perseverance to overcome his disability made him the man he is today , he is a Doctor who treats children with pulmonary diseases , he made me the person I am yesterday and today and forever, I am a advocate against all discrimination against persons with disabilities,

My disabled younger sibling sent me this link. Here is my story….I too have a sibling with a disability. Growing up was a little difficult. Not because of my sister, but because of how I felt my parents treated me. I have a brother (not disabled) and a sister with epilepsy and a scar on her brain which has her congnitive and reasoning skills at a much younger age than what she actually is. My father would always do things with my brother because it was the boy he always wanted, and quite honestly I think he is afraid of her condition, and my mother would focus her time on my sister because of the extra help she needed. I always felt like I was in the way. I unfortunately wasnt given the opportunity to express my feelings of neglect to my parents without being told I was wrong to feel that way, or that I was selfish for not understanding my sisters needs. I am now 30 and have just started to open up to my mother about my feeling of feeling like the 5th wheel. I love my little sister with all of my heart and would do anything for her. None of this is her fault, nor my parents (to an extent). There needs to be more education to families on the emotional roller coaster siblings can go through. When children are diagnosed with a disability, I wish there was some sort of support offered by a therapist or counselor for the rest of the family. And if there is I am not aware. Because of this disability, my parents and I are not as close as I would like. As I have stated earlier, I have expressed my felings recently to my parents and I, again, have been told I am being ridiculous. I have taken a step back from them to allow them to see just how much effort I myself put in to trying to form a relationship with them. Needless to say, we dont talk much. It is heartbreaking what we siblings can go through and feel we have to hide all these emotions. I feel, to this day, I suffer when it comes to expressing my feelings to others. I keep everything bottled up inside.

Thank you everyone for listening to my story. I have never shared this much with anyone before. .

I am crying, I am a triplet and when my brothers and I where one the doctor diagnosed them with Autism. This is exactly how I feel and felt. I’m sure my older two sister would agree. Thank you!!

I am the sister of a Developmentally Delayed brother, whom I now care for since my parents passed away. We are now both in our 50’s with a year difference in our age. I do agree with the descriptions above, but I would like to say that in my own experience growing up there is another experience that I hardly hear anyone talk about. The one that happens when parents are in denial. My brother was passive and did not behave in a way that caused attention as he was growing up. This allowed something to happen in our family dynamic that I haven’t heard to many people talk about. I am not sure if there is a name for it. What happened as I grew up was that my normal abilities where down played. In a sense there was a type of avoidance of my normal abilities and I feel I wasn’t appropriately supported through out my childhood. I could say that maybe my abilities where down played so he is disabilities wouldn’t seem as bad. This was not done intentionally, and I believe that my parents loved me with all their heart. But, they never could come to grips with the fact that my brother was never going to be independent. This lead to a very difficult situation for me emotionally. I guess you could say there was a type of emotional neglect that happened. It was and is very difficult for me to deal with the fallout of growing up in this way. Now that I have to take care of my brother, I have to fight resentment. My parents and I never once discussed my brother’s future or my part in it. Now, it’s like a full time job that I have on top of my full time job. I love him, but he has taken over my life. I did experience all the things written about in this article. But the part that says that the “normal” sibling is held to a “higher expectation” is where I stumbled. I, in a sense, was held to a lower expectation. I was wondering if anyone else has had a similar experience growing up.

My situation was not quite the same, but I always felt being smart or competitive were definitely downplayed at our house. My older brother is developmentally disabled and he wouldn’t have cared about grades, if he even knew what they were (he didn’t). Another thing unmentioned in this article is fear of your sibling. Depending on the disability, this can be very real. I hate all the sugar-coating.

Thank you for the share!

I Love your blog. I have a disabled sister who is 15 months older than me. Our mother dressed us as twins during childhood, as we were the same size. My husband and I moved her into our home after the passing of my parents. She lived with us many years until I felt I could no longer take care of her properly. She lived in a home and went to a day care for the disabled during the day. Her medical records stated that her food was to be cut up and she was to be watched while eating. Last December, the day care was having a Christmas Party. No one watched her as she ate whatever treat or food she stuffed into her mouth. She choked to death that day. Not only do I have the emotions stated in this article, now I deal with the guilt of trusting others to take better care of her than I provided for her. Thank you for this site.

Holy moly I couldn’t imagine. This is why I too opened an adult day care facility, residential housing, employment opportunities, and community access in my hometown because I wanted to have services I could be in control of. My clients are now all my brothers and sisters. I am so sorry for you loss and thank you for sharing.

My older brother and I have a younger brother with mild cerebral palsy and many birth defects. We are all in our 60s. My younger brother has a speech defect, poor hearing, eye problems, one foot larger than the other for which he has had surgery, dyslexia, and other learning disabilities. Yet he has a low-normal IQ, an amazing vocabulary, can drive on his own anywhere, knows an amazing amount of facts about sports, and has always held a job, although they are the low-paying, low-hours types of jobs like dishwasher, grocery sacker, etc. He suffered awful bullying through school, was put in classes with severely mentally challenged children who were nothing like him, has never had a girlfriend (he would love one), and has had one close friend who, we discovered, was trying to get money from him constantly. My parents and I have always over-protected and over-bossed him. I remember feeling so loving towards him as a child, but also embarrassed because of him, which led to much guilt. Our brother has become much more withdrawn in the last few years, angry and resentful, and very overweight. I think this is because of how unfair his life has been, and how he has been treated. It’s directed at my older brother and me, too. I understand how that could be, and I’m very sad and guilty about it. My mother, 87, has always blamed herself for his disabilities. She is hellbent now on making sure he is well-provided for when she is gone. They live together, and they help each other when one is sick or the other needs anything. She is worried sick about him, too, and always has been. I wonder now why my brother and I have remained so immature and dependent on our mom. We rely on her to help us out of $ issues, we rely on her wisdom, and we have remained scattered, rather irresponsible people. Is it obvious to everyone but US why that would be? Is the big factor here our little brother’s life-long struggles with his disabilities? Did we remain “children” too long because we had to grow up too fast? Obviously we need therapy. And what can we do to help our little brother now? We remain a close, loving family, but the underlying problems are not letting themselves be buried any longer.

I really enjoyed reading your post. I appreciate what you have said and have felt everything you wrote about. I too write about what it is like being a sibling to a brother with disabilities. My brother is 15 months older than me and 6 years older than my sister. We definitely have a different perspective on life because of his disabilities. Thank you again for sharing!

Where could I read some of your writings?

This is a great article. I grew up with an older autistic brother and went through a lot of those feelings. I share them in my middle grade novel No One Needed to Know.

“Be a door”. My brother has been gone for over 30 years, yet this article brought out so many emotions. I hope that I was a door for him.

Thank you. I am the youngest of four and am the one with the “disability.” It was good for me to read this. Im sure they went through all of these feelings but also tried to be the door for me and still do.

I can relate to so much of what you wrote in this blog. I have a special needs brother who I am now and have been legal guardian for since our mother passed away 13 years ago. There has been many ups and downs but I feel so blessed to have had the opportunity to grow up with my brother. He has taught me so much.💙 Thank you!! Carrie

Thank you. I had a younger brother with learning disabilities and in the 1970’s most people didn’t get why it was so hard. Fortunately for him, my mom was a teacher who KNEW something was wrong and worked hard to get him the help he needed to be a success. But I took the brunt of his anxiety, anger, and issues because I was safe and would love him. Of my three children, two have special needs. One is autistic and one has apraxia. My oldest is the “normal” one. I found it interesting that his college essay was along similar lines as this blog. That his life challenge was being the normal one in a family with special needs siblings. All the things he gave up (a room of his own). All the social anxiety of everyone knowing he was “T’s” brother. I shared this with him and hope it helps him continue to move forward.

Thank you for sharing this! I can relate to a lot of these feelings, especially when I was much younger and my sibling was in and out of hospital a lot (child jealousy is a funny thing). Really insight post and I will be following 🙂

– James Peacock

Excellent and thank you. My brother n law has MS and we have been dealing with mobility issues for some time. We have learned a lot over the last 20 years. Thanks for posting this.

I can relate it very much. As I also had a brother with disability. You explained it very well I am gonna second that. I will be following to read more related content like this.

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College Essay: Finding purpose through my sister

“Your sister has autism.”

I have learned that life is not all about me. I realized that I need to focus on others, especially those who are most in need, like my sister.

Those four words changed my life.

In the fall of 2015, my parents, my two sisters and I gathered around our kitchen table. My sisters looked perplexed. My mother’s lips were trembling. She struggled to say the words. After, there was silence. Salty drops were running down my cheeks. The words that my mother spoke went through me like a bullet. I still hear those words every day. Now, though, they give me purpose, whereas before they left me devastated.

During the last 18 months, my love for my 12-year-old sister Magdaleny has grown stronger and stronger. I have learned that life is not all about me. I realized that I need to focus on others, especially those who are most in need, like my sister. I knew that it was not going to be an easy task, but I was determined to support her.

Opportunity found me quickly. One day, in a public library in Bloomington, the librarian finished asking me for the personal information needed to get a library card. Then he asked my sister for the same basic information. She stayed quiet when the librarian asked her date of birth. She didn’t say a word; she panicked. That’s when I knew that I had to step in and say, “June 22, 2004.”

The librarian said, “Thank you,” and gave me a confused smile. When I looked at Magdaleny, she seemed to be embarrassed, staring at her hands and not making eye contact with the librarian or me. My heart dropped. My sister did not know what she had or how her disability affected her, but I was there to help her with her communication skills and behavior.

I’m still helping her today.

I work with her interests and talents, focusing on what she can do rather than what she can’t. Her behavior at home can be hard to handle. She often acts like a toddler, demanding to be in control. During these times, I help her understand that “no” is an OK answer, and that there is no need to be frustrated. It’s tough, but I won’t give up. I believe God meant my autistic sister to be a way for me to learn my purpose in life. I know God allowed me to open my heart and understand that my mission is to serve others.

Importantly, that mission includes the poor. When I was growing up in Mexico, there wasn’t enough money for food and housing, and certainly not enough for the medical care my sisters and I needed. My father had to leave the family and go to the United States to earn money for our care. That’s when I realized that there’s no health care if you’re poor.

These two life experiences, my sister’s autism and growing up poor, have inspired me to become a pediatrician. I want to support families, especially those with infants and those who can’t afford medical care. I want to bring hope to families in developing countries. My dreams will bring challenges, and it won’t be easy. But courage, faith and knowledge are the values that will keep me going. I have Magdaleny to thank for that.

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Growing Up Alongside a Sibling With a Disability

When children help with the education of a brother or sister with special needs, the outcomes are often good for both.

By Keren Landman

Not long after my mother learned that my brother, David, was autistic, she began what she called “little school”: sessions in which she taught him to draw faces, cut with scissors, read and cook. He was 4, I was 2. I recently asked her how she balanced David’s needs with mine. “You were the teacher’s assistant,” she said. “I was trying to make you feel important.”

It was the 1970s, and researchers considered siblings of children with disabilities as a sort of disadvantaged population. Since then, a body of research suggests that when children help with the education of a brother or sister with a disability, the outcomes are often good for both — and my mom was way ahead of the curve. She believed she could help David and lift me up, too. There wasn’t a lot of guidance at the time, so Mom hired an education specialist and talked to David’s teachers and school psychologist.

More recently, researchers have viewed families with special-needs children through a more positive, less stigmatizing lens , said Meghan Burke, Ph.D., an associate professor of special education at the University of Illinois at Urbana-Champaign. This modern framework acknowledges the strengths children may gain from having a sibling with a disability, including enhanced adaptability, empathy and tolerance, said Burke.

However, several studies have suggested these siblings also have higher rates of anxiety, depression and difficulty with peers. Low income families are especially vulnerable because they have less access to resources.

What is clear, Dr. Burke said, is that siblings of children with special needs have needs, too — and parents can do a lot to meet those needs with the help of a few strategies and resources.

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“The first thing is to recognize that the sibling experience parallels the parents’ experience,” said Emily Holl, director of the Sibling Support Project, a national program that works with siblings of people with disabilities. Like adults, children desperately want information about their siblings’ health, but they’re often excluded from the conversations parents have with doctors, social workers and therapists.

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• The Sibling Relationship: Growing Up With a Special Needs Sibling

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Opinion: Living with a sibling with special needs

Credit: Caterina Tomassini

WSPN’s Caterina Tomassini with her older brother Michael. Michael has autism and epilepsy and is nonverbal.

Caterina Tomassini June 14, 2018

For most people, having a sibling means fighting over the TV remote, having someone to play outside with and sharing endless inside jokes. But not for me. For me, my sibling is someone I watch over, learn from and share unique moments with.

My brother, Michael, is 18 and has special needs. He has autism and epilepsy, and he is nonverbal, meaning that he cannot talk. Although we never fight and we never got to play outside together as kids, we have our own ways to communicate and have fun.  

Sometimes I grow frustrated when Michael starts a new self-stimulatory behavior — also known as a stim — which often includes repetition of physical movements, words or sounds. He repeatedly blows raspberries all day, which drives me up a wall. And when I say all day, I mean all day ! It’s hard to not be angry at him, but I know that he can’t help it, so I have to refrain from yelling at him.

Try putting yourself in my shoes. I have no idea what it’s like to have a typical sibling, just like you probably can’t imagine what it’s like to have a sibling with special needs. You probably can’t see yourself pushing your brother’s or sister’s wheelchair in the store just like I can’t imagine asking Michael to pass the salad at dinner.

Even though there are some aspects of having a sibling with special needs that are hard, there are surely a whole bunch of great things.

I get to experience some pretty unique things that siblings of typical kids don’t get to experience. How many people get to go to physical or occupational therapy with their sibling and play with fun equipment like swings and bouncy yoga balls? Or how about this: I get to learn new signs in sign language like ‘eat’ or ‘bathroom’ to better communicate.

We’ve had dozens of Patient Care Assistants, or PCAs, come to our house to help Michael with everyday activities, so I’ve made friends with truly interesting and different people. We also get to attend events for other kids with special needs and their families, where I’m exposed to a variety of different kids who ranging from being mildly autistic to having severe cerebral palsy. And do you know what’s really fun? The fact that when we go to Canobie Lake Park, we get to cut all the lines because Michael is in a wheelchair.

But besides all of the fun aspects, I’ve learned important life lessons.

My brother requires extra attention on a daily basis, which has helped me learn patience. Michael doesn’t attend a public school. Instead, he goes to a school that specializes in kids with disabilities. At his school, they don’t learn math equations or write essays. That has helped me understand other kids at WHS who can’t comprehend school concepts as easily as others.

Many people don’t understand why some kids are in wheelchairs, and they make fun of serious medical terms such as seizures. Instead of being angry at the people who make those terribly rude comments, I understand and accept that those people don’t have the same kind of exposure and understanding that I do. When I hear people make those comments, I like to (nicely)  educate them on the topic and explain that it’s not a funny joke.

In case you didn’t notice, at the beginning of this article, I said that my brother has special needs. I didn’t say that he is disabled. The reason for this is simple: my brother is very much ‘abled.’ He may not be capable of getting dressed on his own or getting a driver’s license, but he is more than capable of putting a smile on the face of anybody he meets.

So, if you are going to take one thing away from this article, I ask that it be this: do not use the word “retarded” under any circumstances. This word is one that I wish I could eliminate from people’s vocabulary. This word hurts not only me and all the people who are lucky enough to have a person with special needs in their life but also all the people out there who have special needs.

The last thing that I ask is that you don’t take being able to do everyday activities for granted. Take some time to appreciate how fortunate you are that you can brush your own teeth, play a sport and simply use your voice. Try to think of all the kids out there who spend endless hours in the hospital receiving medical treatment and how lucky you are that that’s not you. Next time you see a person with special needs, think about all that I’ve said. Maybe you could even take some time to make a friend with people who have special needs; it would make their day and probably yours, too.

Opinion articles written by staff members represent their personal views. The opinions expressed do not necessarily represent WSPN as a publication.

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Caterina Tomassini, class of 2021, is a fourth year journalism student and is the managing editor this year. Outside of journalism, Tomassini plays club...

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Inspired • Jun 14, 2018 at 5:55 PM

Amazing article Caterina!!

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All About the Eye Doctor

Coming home to disability: one sibling’s story, the statewide conference on education of the deaf and hard of hearing.

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Spanish Version Available

Authors: Elizabeth Lewis

Keywords: family wisdom, sibling, deafblindness, disability community, anthropology

There’s an old saying among anthropologists that you have to spend time in another culture before you can truly understand your own. The unspoken footnote to this bit of wisdom is that you won’t understand either place until you come home. The foreign makes the familiar intelligible in new and previously impossible ways.

I first experienced the feeling of “coming home” to disability as an undergraduate researcher in Ghana. Pushed by my parents and encouraged by a family friend who was an international deafblindness expert, I had been careful to set everything up in advance for my short-term project on blindness and social stigma. Our friend’s stories of working with families and educators on deafblindness issues in Asia and Africa dazzled me, and I was curious about following in her path, even for only a short period. It would be the first of many research experiences with disability after growing up with a younger sister, Katie, who has CHARGE syndrome and deafblindness.

On the first day of my project, I hopped a taxi from my temporary home at a local hostel to the office of the Ghanaian Association of the Blind. It was rush hour and Accra’s streets were packed. People selling gum, cigarettes, and compact discs wove their way between stalled traffic at lights, along with children and adults begging for money. I noticed adults with physical disabilities crawling on the sidewalks, flip flop sandals positioned carefully on their hands and feet to protect them from the rough ground. I had been told of this and had even seen pictures, but the image still shocked me.

I arrived at the Association of the Blind and tried to make my way through the complex in search of the appropriate office. As a 21-year-old white American woman, I stood out. People were curious. Two men in their twenties approached me. They were not verbal, so they began signing to me. Although I did not understand most of what they said, we all grinned widely as we tried to communicate across the layers of barriers. They led me around the facility to the office where I was to meet an internationally respected disability expert, and we said our goodbyes. I recall a feeling of utter naturalness and comfort. It hit me: I was in the right place, in every sense.

This was the first time I truly felt the universality of my position as a person who grew up in the disability community. Until then and, indeed, for many years after, my feelings about disability in my academic and professional life were marked by ambivalence. While part of me perhaps always knew I would end up dedicating my career to disability issues, I was reticent – scared, even – about committing. Was I really ready to welcome disability into my work life, since it would always be a fixture of my personal world? And, if I didn’t want to be a special education teacher or service provider, what could I possible do?

As a stereotypical older sibling, it was my job to help and I took pride in it. Still, as is typical, I became less involved as I got older. I was busy with high school stuff – classes, extracurriculars, and friends – and then I went away to university. My love for Katie was unwavering, yet I noticed a growing public-private divide in my relationship with disability. It had become something that was confined to my family life, but my academic and personal realms were increasingly separate. Or were they? Although I felt that way at the time, looking back I can see clearly that I flirted with disability issues as a vocation throughout college. I simply wasn’t ready to commit, nor did I know where I fit in.

During my semester in Ghana, I was shocked by the genuine interest – curiosity, even! – that my peers and professors showed for my research. It had never dawned on me that people who were not personally connected to disability might care. As a sociology and anthropology major, I had no idea that disability was even a viable area of study. I did not know of any scholars in traditional academic areas who focused on disability, nor had I read or even heard of any books or articles on the topic. While gender, sexuality, and race were fair game in terms of identity politics, disability somehow remained in the shadows. Even if I’d been ready to pursue an academic career researching disability, I did not yet know it was an option. I had no models.

In the years that followed, I largely forgot about disability outside of my family life. I worked abroad briefly after graduation and then returned to the U.S., where I embarked on the typical life of many in my peer group. I lived in a large city filled with countless restaurants and bars, worked diverse jobs of various interest levels, hung out with my friends, and met the incredible man I would later marry. For the first time in my life, I eschewed all things serious. I didn’t even do volunteer work! And I was totally and utterly bored.

Young and relatively mobile, I took my meager savings and moved to South America in search of more. After a position as a preschool English teacher in Ecuador ended, I wandered down to Bolivia in search of volunteer work and adventure. I began helping out at a residential center for children with disabilities – many of whom had been abandoned – and also orphans. When I first toured the facility, I once again encountered that unmistakable sense of knowing. Disability was home.

The experience opened my eyes in new ways to disability realities I had not encountered. I saw multiple children whose disabilities – physical and intellectual – were inseparable from abuse in their former homes. Most of the kids never learned basic living skills, much less anything academic. Well-meaning and overworked staff, many of whom were just teenagers themselves, tied children to wheelchairs to keep them in place.

I will never forget the day that my now husband, who was with me, realized that his favorite student could walk with assistance and did not need to stay in her wheelchair. Little Magdalena, who was known for giving wet, sloppy kisses on the cheek, spent her mornings over the weeks that followed dancing with my husband. She loved him. We marveled at her secret abilities and wondered what else she might have been able to do with adaptive technologies, educational funding, and family and community support.

I came back to the U.S. with a new sense of direction. I began an interdisciplinary Master’s degree program and promptly fell in love with a class on the anthropology of disability. I had not known the topic even existed! I finally encountered disability studies literature, as well as social science and humanities works on disability. I was hooked.

Five years later, I can finally say that my old ambivalence is gone. I have immersed myself in the formal study of disability and am pleasantly surprised by the support I have received from the academic community and beyond. I spend my days researching, reading, writing, and talking about disability issues, and I am lucky to be involved with some fantastic local organizations. I have conducted research in Central America and the U.S., presented papers at multiple conferences, and I am in the process of writing a dissertation on family experiences with complex or unidentified diagnoses. It has been a long road, but it all circles back to Katie.

Every aspect of my work is informed by my own experiences as a sibling, and I am honored and humbled by families’ willingness to grant me a small window into their stories. I feel so lucky to be part of a nascent but growing group of social science and humanities scholars working in the area of disability. I am also steadfast in my commitment to generating scholarship that reaches beyond the walls of academia. I hope that my work will be read by families, organizations, professionals, and policy makers. As a sibling-researcher, these are not abstract aims. I literally think about them every morning as I sit down to write or each time I meet with other families. These goals animate every step I take.

Another concern was that I might develop so-called problem behaviors and act out in response to our family’s struggles. In reality, I never felt like that was an option. My family had our hands full and simply didn’t have room for me to do poorly in school or get into trouble. As an adult, I am not convinced that this pressure was a bad thing. Did I miss out by pushing myself to make good grades and not get caught up in boys, partying, or risky behaviors as a teenager?

The discourse on siblings still hinges on a curious paradox: whether we are too good or too bad, we will still be pathologized. Our behaviors are all too often explained in terms of our sibling status. This is an extremely problematic gap in understandings of who we really are as a diverse group of individuals with different goals, anxieties, and hopes, who happen to be unified by our sibling status. Can I explain many aspects of my personality in terms of my experiences with Katie? Yes, but that doesn’t make those explanations correct, nor does it reveal anything about how I might have turned out in a different family context.

Even today, I struggle to express my childhood feelings about Katie’s disabilities for one simple reason: Katie was normal to me. I knew nothing else and, even in the earliest weeks of Katie’s life, when we did not know if she would survive nor did we understand the complexity of her intellectual and sensory disabilities, I was fiercely proud of her. She was my sister. She was the only sister I had, the only sibling relationship I would ever know.

As I prepared to enter high school, my family became involved in a heated dispute over Katie’s educational rights. I do not recall speaking to any of my friends about it until my final year of school, but that silence was part of a broader social protocol. My peers and I restricted our conversations largely to things like boys, clothes, and gossip. I later learned that some of my friends had faced serious family struggles during that time – addiction, mental illness, infidelity, domestic violence – yet we didn’t discuss these experiences until many years later. Perhaps disability had less to do with my silence that I used to think.

Even at the peak of my family’s legal battle to meet Katie’s educational needs, the only profound feelings of sadness and anger I had were never directed at Katie, but always toward the failure of the institutions we relied upon to meet our needs. The key is that these needs were all of ours. I learned early that the perfect family’s depicted on television are nothing but fiction, and in reality we all have our struggles. I realized, too, that we live in a world in which people are literally cast aside. This was probably the hardest thing to process as a teenager, and I recall a palpable sense of grief for the naïve optimism I saw in many of my peers.

Without anyone to follow, I simply did the best that I could. I winged it. Once I began college, I made an explicit effort to open up about my experiences with Katie from the start. I learned very quickly that people were genuinely interested in hearing our story, and my previous silence lifted.

Looking back at my circuitous path, I should have known that I was a researcher at heart. My passions are meeting families, hearing stories, writing what I see, and sharing these powerful disability realities with people who might not encounter them otherwise. My aim is, and perhaps has always been, to get the word out. I want to learn, witness, and disseminate.

I want to be part of a small, but growing, effort to push disability from society’s margins and into mainstream discussions. I want to do everything I can to make sure that other siblings do not feel as isolated or singular as I did when I was younger, and to encourage scholars and journalists to take disability seriously – not as an object of pity or a source of stigma, but as a very real aspect of the human experience that will touch each of us in some way.

I want to tell Katie’s story, to use my own family’s experiences and those of others like us, to effect change and make people listen. It took me until now, as a married mother in my thirties, to really embrace this as my professional destiny, but I think I can finally say that my old ambivalence is gone. Let’s do this.

July 30, 2012

College essay: a sister's love for her brother with autism.

4 comments:

this is SO beautiful and so encouraging to me! thanks for sharing. lovely children, merrill! xo

Thanks, Hannah!

Just met you from your leaving me a comment on FB (we both have Justin's with Autism) and now I am pouring over your blog and came to this post. My Justin has 3 siblings, but for a long time it was just he and my daughter (22 months younger) and everything your daughter stated rings so true with my daughter. People will say to me, "Poor little miss, I bet her life is so hard with Justin." And it baffles my mind because all the challenges have shaped her into one of the most compassionate 7 year olds I have ever met!! She's always had a special touch with Justin and your daughters words about learning patience and advocacy are precisely what I've seen as a blessing for my daughter--I've just never seen it written so beautifully before!! Thank you for sharing her letter. My daughter will love reading this someday--I'm going to print it off and save it for her:) Shannon@SewSweetCottage

Thank you, Shannon. I hope that your daughter grows up to feel the same way about her brother. It isn't easy, but it sure is rewarding. ♥

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Study shows positive effects of growing up with a sibling with disabilities

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Having a child with a disability or a developmental delay is often a stressful experience for a family. Siblings in such families may be exposed to greater stress and challenges. There is little research about the positive effects of growing up with a sibling with disabilities. However, a new study published in Child Development by researchers at the Hebrew University of Jerusalem, the University of Cambridge, and the University of Toronto, examines how growing up as a sibling of a child with disabilities may nurture empathy. This is one of the first studies to examine the possible positive effects of growing up with a sibling with a disability.

"The findings indicate that siblings of children with disabilities may have greater cognitive empathy (i.e., understanding of others' thoughts and feelings), which is important as cognitive empathy is key for social skills." said Yonat Rum, a postdoctoral researcher at the Hebrew University of Jerusalem and the University of Cambridge.

Researchers examined data from the Longitudinal Israeli Study of Twins which includes 1,657 families of twins born in 2004-2005 with demographic characteristics similar to those of the Jewish majority population in Israel. Sixty-three families where one of the twins has a disability and the other is typically developing were identified.

The typically developing twin siblings of children with disabilities were compared to 404 typically developing twin siblings from the rest of the sample, on measures of cognitive and emotional empathy and prosociality, completed when all children were 11 years old. Participating children were administered a self-report questionnaire assessment of cognitive and emotional empathy and a computerized task designed to assess prosocial behavior. In addition, the participating children's parents completed a questionnaire to assess their children's prosocial behaviors.

The data showed that typically developing children who had a twin with disabilities scored higher than typically developing children who did not, in self-reported cognitive empathy. Contrary to predictions, no differences were found in emotional empathy and prosociality.

These positive effects might be due to the specific 'advantage' of cognitive empathy to better understand their sibling with disabilities, and to support the sibling relationship." Ariel Knafo-Noam, Professor, Hebrew University of Jerusalem

The authors acknowledge the preliminary nature of the findings and call for further research using different modes of measurement in this neglected field.

This research was supported by the Israel Science Foundation and partially supported by the Halbert Centre for Canadian Studies, the Hebrew University of Jerusalem, and an Azrieli Fellowship.

Society for Research in Child Development

Rum, Y., et al. (2022) Are there positive effects of having a sibling with special needs? Empathy and prosociality of twins of children with non-typical development. Child Development. doi.org/10.1111/cdev.13740 .

Posted in: Child Health News | Medical Research News

Tags: Children , Disability , Research , Stress , Twins

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I'm a Special Needs Sibling. These are 10 Lessons I've Learned from My Brother That Can Help All of Us Live More Fully

My brother Eric’s birth was “normal,” but our parents soon noticed that something about his development wasn’t. After a series of examinations and consultations with various doctors, he was diagnosed with cerebral palsy, a neurological disorder caused by damage to or abnormalities inside the developing brain that impairs brain function, and for which there is no cure.

For some people with cerebral palsy, this diagnosis presents with minimum, though noticeable symptoms such as reduced speech or movement. For Eric, his condition was far more profound, with brain damage denying him use of language to communicate and no control over his muscles.

Last week, Eric passed on. I was with him, our sister Rachel, and our loving parents as he died peacefully. In the days since, Rachel and I have talked a lot about how we may not have had a typical sibling relationship with our brother, yet he was the most important teacher of our lives.

Here’s what Eric taught us—and what it can show all of us about how to live more fully.

Lesson 1: Appreciate Everything You Can Do

It’s estimated that the average adult makes 35,000 conscious decisions each day . Tasks like turning off our alarm clock, brushing hair and teeth, choosing what to eat, adjusting persnickety socks, and saying, “I love you” are just a few. For Eric, executing any one of these deeds would be a miracle, making me acutely aware and abundantly appreciative of my own abilities.

I first internalized this the day I learned how to swing on a swingset by myself, immediately understanding that my brother would never know the joy of such independence. Feeling guilty for being “well” is a common experience for siblings like me , and while it would be easy to be swallowed by sadness, something else helps me to transmute it: living with gratitude. By appreciating every little thing that your body and mind can do, over time you will realize that not one of them are in fact, “little.”

Lesson 2: Empathy is the Answer

Nobody chooses to live with a neurological disorder or to be born with a disability any more than we choose our height or skin color. No matter why someone is disabled—be it a birth trauma, a childhood accident, a genetic anomaly, or something else—not one soul asked for it. Still, we aren’t as kind as we could be.

Over the years I’ve paid close attention to how others encounter the differently abled in public. Whether at a grocery store or a park, common reactions include ignoring, staring, and not-so-subtle avoidance (turn and go!). Unfortunately, mocking and name-calling happen frequently, too. As hurtful as this is to experience, I suspect such actions stem from modeled behavior or a fear of “other”. Perhaps some were simply never taught what to do.

The answer is simple: extend empathy.

To do this, imagine what life might be like from their perspective and consider how they may feel. Then, consider how you might want to be treated if this were you—and act accordingly.

Lesson 3: Speak Up Even Especially When Your Voice Shakes

Thirty years ago, a high school teacher broke my heart. In response to a classmate’s joke, Mr. X quipped, “You’re a retard.” As the class laughed, my stomach lurched and my face flushed red with anger. To hide my hurt, I laid my head down on my desk and silently debated what to do. When the dismissal bell rang, I approached Mr. X.  With voice shaking and tears streaming, I told him about Eric and how his use of the R-word as a slur was both the most disrespectful and disappointing act of any adult in my life.  His response to my distress stunned me as much as the offense itself.  “Aww come on, kiddo” he chuckled, then dismissed me by opening his newspaper.

I left the classroom and never spoke to him again. Over the next two years Mr. X avoided me. Though he would avert his eyes on the infrequent occasions we’d pass in the hall, I found satisfaction in looking directly at him—seeing that it was now he who was flush-faced and nervous.

Though I blubbered my way through, I learned that speaking up for yourself and others isn’t always easy, but it’s worth it—especially when defending the defenseless.

Lesson 4: Share Your Gifts, Shine Your Light

We all want our lives to matter; we all want to make a meaningful difference and to be remembered for our contributions. Instead of measuring our impact by the achievements hanging on the wall, the balance in our bank account, the likes on our last post, or the years since our birth, consider quantifying life in a different way: by the frequency in which you’ve shared your gifts.

Maybe you’re a talented gardener or excellent strategist. Perhaps you bake, clean, sing, or listen better than most. If you’re not sure what your innate gifts are, start by soliciting loved ones for feedback. Then, acknowledge, embrace, and share your gifts with others. We all have gifts worthy of sharing, and when we do, we can meaningfully impact others.

Lesson 5: Use Can-Do Courage to Live

Getting from where we are to where we want to be requires belief, commitment, and disciplined action. Whether wanting to repair a relationship or invite someone on a date, learn to crochet or learn a new language, running a marathon or running for elected office, if something is calling you, don’t let fear hold you back. Your desire may feel uncomfortable, but if you CAN, then DO! Give it your best effort without being attached to the outcome.

For example, I’m a back-of-the-pack runner and my crocheted efforts are barely giftable, but that doesn’t lessen the joy of the activity or prevent me from participating. Using can-do courage may seem like a small act, but when compounded, it equates to a lot of living. In this way, I’m not only seizing opportunities to experience my life, but I’m honoring Eric and those who would if they could.

Lesson 6: Pause and Practice Patience

For a myriad of reasons, we all move at a different pace. Some of us independently maneuver through the world with ease, while others labor under the weight of cumbersome equipment or rely on others for physical navigation. It’s likely that expressing frustration at someone’s pace isn’t going to make them move any faster, nor are we helping ourselves by getting bothered.

However, having to wait offers an opportunity to help yourself. By pausing and taking deep breaths, you’re practicing patience. When we do this, we allow our nervous system to calm and collect—an act that positively impacts our physiology, both slowing our heart rate, and managing spikes in blood pressure. At a minimum, this is a better alternative to spewing a reactive comment or angrily huffing by. No matter the pace, we’re all trying to get somewhere, so remember to pause and practice patience.

Lesson 7: Be A Champion for Caregivers

When confronted with scary real-world events, Mr. Rogers famously encouraged us to “Look for the helpers.” In the same spirit, to witness love in action, I say, “look for the caregivers.” Whether caring for a parent with cognitive decline, a child with a life-threatening medical condition, or a grieving friend, those who physically and emotionally care for us are doing God’s work.  

Unfortunately, their saintly efforts are often woefully unrecognized and under supported. In addition, studies show that caregivers suffer a variety of health problems , including higher rates of anxiety, depression, and stress compared to their peers. Yet, due to factors such as increased life-expectancy and a shortage of professional care facilities, an estimated 44 million Americans currently serve as an unpaid caregiver. Recipients of care and those who bear witness know full-well the immeasurable blessings of a loving caregiver. You likely won’t find these unsung heroes with a verified blue check mark or thousands of followers on social media (as if they have time!), but their contribution to society is indisputably worthy of such rock-star recognition. (Mom and Dad, I’m looking at you.)

Lesson 8: Discipline Your Disappointments

Life is full of disappointing events: the friend who moved away, the promotion you didn’t receive, the partner who betrayed you. For some, disappointment comes early and often, which is why it’s helpful to embrace this life skill sooner than later.

Step 1: When disappointment comes, allow yourself to process and fully feel the disappointment. Be mindful of how you respond and how the disappointment is impacting you. Take time, but don’t wallow.

Step 2: As the feelings surrounding your disappointment ease, turn your attention to what is possible or what is next.

Each time I discipline my disappointments, I spend less time at my own pity-party and recover a little easier, too. The ability to withstand and recover from difficulties is known as resilience, and studies show that just like a muscle, it’s something that we can build and strengthen. Struggling with a current disappointment? Discipline it and flex—your resilience will be buff in no time.

Lesson 9: Ask for Help

No matter how able we are, we all need the help of others to navigate life. Whether long-term support is required to meet our most basic needs, or we need help with a single task, there is no shame in asking for or receiving help. The more we do, the more we’re able to recognize that no matter how unique we believe our human experience to be, we’re not alone—others have had similar experiences and can likely relate. But if we don’t seek support or ask for help, it’s unlikely we’ll receive what we desire.

False beliefs of inconveniencing others or appearing weak prevent many from seeking support. However, studies show that people are more willing to help than we expect, and both receiving and providing help has lasting advantages including strengthened connections. In addition to those in your personal network, talk with your care team; doctors and therapists are excellent resources for services and may be able to help connect you to others with shared or similar challenges. Whether you’re in need of a friend to text, an online community to join, an in-person weekly support group, or a nurse for daily homecare, ask for help and keep asking until you have it.

Lesson 10: Learn, Do, Teach. Repeat.

Though it’s true that Eric didn’t live a “normal” life, he undeniably lived an extraordinary one if you measure his life by his impact. Not only was he the single most important teacher of my life, but he also influenced the lives of countless others, including family members, friends, neighbors, and people throughout his community (Mr. X included!).

It’s in the deeds and actions of his five nieces and nephews where a glimmer of Eric’s exponential impact shines through. Ranging in age from 13 to 21, they have never known life without their Uncle Eric, and because of him, they are moving through the world with gratitude, empathy, and respect for the differently abled. I suspect that eventually, they will model this for their own children, and one day, maybe even their grandchildren.

I hope Eric knew how grateful I am to be his sister and how deeply he influenced my life and inspired me to live. My greater hope is that in learning about Eric, he will inspire you, too. Whether by using your courage, practicing your patience, speaking out against the R-word, or speaking up for others, each empathetic act honors Eric and everyone living with neurological and physical disabilities.

Through your acts, yet another powerful lesson from Eric emerges: Some of us can move humanity forward without ever taking a single step or speaking one word.

Stephanie Sarazin is a writer, researcher, and grief educator. She is an avid reader, and recreational runner, and lives in North Carolina where she enjoys hiking and time outdoors. Her book Soulbroken: A Guidebook for Your Journey Through Ambiguous Grief is the 2023 Nautilus Book Award Gold Winner for Grief & Loss and can be found wherever books are sold.

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Because differences are our greatest strength

How I owned it: 3 college application essays

By The Understood Team

Many students (and families) wonder if it’s a good idea to disclose their learning and thinking differences in their college application essay.

Whether to disclose is a personal decision. But for these three students, all mentors with Understood founding partner Eye to Eye , it was a positive move. Here are portions of their essays, and their thoughts on how the process of writing about their differences changed how they see themselves and their challenges.

1. Brittain Peterson, senior at University of Denver

Like most people with dyslexia , I have had the inevitable moment of feeling powerless and unintelligent. But I have also had the positive moments of feeling successful and capable.

Compassionate teachers made the reward of being successful so much greater that I came to love school, while the unaccommodating teachers showed me the importance of advocating for myself. My learning difference also taught me to embrace differences in others. Because I have learned to find my own strengths in unconventional places, I have learned the importance of doing the same for others.

Currently, the most challenging part of dyslexia is overcoming the logistics: scheduling extended time for tests, arranging computer access for in-class essays, planning ahead to source books on tape when necessary. I know that I will have to navigate the logistics of college just as I have navigated the logistics of high school.

But, now it won’t be a question of whether I can do it, just of how.

“I think writing my application essay boosted my confidence. It reminded me that dyslexia didn’t define me, but that it described me. It helped me grasp the idea that my dyslexia had taught me a great deal. It also forced me to picture how I would use accommodations in college , which allowed me to picture myself in college.

My essay also helped me to choose which college to attend . I wanted college to be a place to enjoy learning and not be frustrated with it.”

2. Scott Thourson, bioengineering PhD candidate at Georgia Institute of Technology

In college, at age 19, I was diagnosed with attention-deficit hyperactivity disorder (ADHD). In grade school, my intelligence was masked by my low reading comprehension. I neither fit in with the top students (I could not read) nor with the bottom students (I excelled in mathematics).

Firing spitball guns, among other mischief, was my way of protecting my self-esteem and allowing me to focus on coping with my learning differences in school.

When I was 12 years old, my mother gave me an Electronics Learning Lab. I observed that when I could apply knowledge from my electronics projects to new concepts in school, I overcame my ADHD and enhanced my academic performance.

“One of my mentors told me to always be thinking about my life as a coherent story that can explain and tie together everything I have ever done. Making lists, writing journal entries, creating mind maps, or any way of organizing thoughts and ideas can help bring that story to light.

I chose to disclose my ADHD because I was finally proud and confident in my story. I’m a very open person, so I was already comfortable with putting it out there. What made me feel good was how I put it out there. Having enough confidence in my accomplishments and coherence in my story made me feel a lot better about being me and having ADHD.

I wasn’t nervous about what the reviewers might have thought; I was excited. This was definitely a turning point in my life. It wasn’t until this point that I actually started thinking that I was smart.”

3. Carolyn Todd, sophomore at McGill University

Dyslexia is both a blessing and a curse. I struggle every day, working twice as hard as other students. I get stereotyped as stupid by people who do not understand what it means to have a learning difference. However, I refuse to give up. I have learned the importance of standing up for myself and others.

Being dyslexic makes me able to look at the world and see the amazing potential that exists in diversity. Dyslexia has given me the tools to see the beauty in difference and the passion to change the way we define intelligence.

I want to show the world what I see.

“I chose to disclose in my essay because I believe it’s important to raise awareness about different learners. I’ve noticed that topics of disabilities and mental illness are quite taboo. Not enough people take the time to become educated on what they are and can make false assumptions on how they affect someone. I thought that I could, in a small part, help the movement of trying to change this.

Disclosing in my essay felt empowering. Growing up I had learned to hide my dyslexia, and it felt good to be able to embrace the positivities associated with it and share that with others.

It changed the way I saw myself because it gave me more confidence and helped to reinforce the truth that having a disability doesn’t make you any less ‘smart’ or capable.”

Hear from six students in the Eye to Eye mentoring network on the accommodations that helped them succeed in college .

Read how self-advocacy helped a college student with dyscalculia fight for her accommodations.

Find out how another student uses dictation technology to handle college writing.

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Autism Through A Different Lens: A Sibling’s Perspective

A family’s autism journey.

In my profession, I often write articles from a parent’s perspective about having a 17-year-old daughter (Annie) with severe autism, and intellectual and developmental disabilities. My overarching goal, with these stories, is to provide compassion, understanding and hope to families, caregivers and professionals who may be in a similar situation.

For the past 15 years, I’ve made it my mission to understand Annie’s diagnosis, and provide her with a secure, happy and fulfilling future. Learning how to advocate not only for Annie, but for all individuals diagnosed with autism, has aided in this mission. Becoming educated on the topic of autism also has been somewhat cathartic, as it allows me to feel as though I’m doing something to help Annie.

For Annie – and countless others living with cognitive differences – there is no known cause or cure, or predictable therapy or treatment regime guaranteed to ensure maximum impact. These truths can be extremely overwhelming for any parent or individual. These truths, however, also can be eye-opening.

My 18-year-old son, Danny, recently shared an essay about his personal journey with his sister – from a sibling’s perspective. It was similar to my own journey, yet uniquely different, and it could not go unseen (I did get his permission to reprint!)

“ Haircut .” “ Yes, Annie, you will have a haircut on Tuesday. ” “ Haircut .” “ Yes, Annie, I know .” “ Haircut … Haircut .”

Now, imagine this conversation continuing for four hours straight, while working on a crucial school assignment. All my life, I have lived with my sister, Annie, who has autism. Autism is a developmental disorder that affects the social interactions and communication of an individual. She means the world to me and is one of my biggest inspirations. Although I feel this way, the rest of society doesn’t understand her in the way I do. Her disorder isn’t apparent in how she looks, but in how she acts. She struggles to communicate and gets very frustrated.

I am a firm believer that something positive comes out of every situation. Annie’s autism has served as a catalyst to change my own outlook on life. She has changed me as a person, shaped who I am, and instilled three core values I hold above all else.

The first value is patience .

Every time I get frustrated with Annie, I imagine the struggle she undergoes, every day, that is infinitely harder than what I am going through. Annie has anxiety, so she repeats the same phrases, such as getting a haircut, over and over again because she needs to have a set schedule she follows every day. From this, I have learned to be patient with others, and become less frustrated in the real world.

The second value is perseverance in helping others.

I am committed to helping my community, and helping make people aware of people like Annie. This led me to volunteer in my community with organizations that help families with autism because I understand the difficulties families undergo in transitioning to living with a child diagnosed with autism. I also began volunteering with local political candidates in my area because political decisions play a major role in how children with disabilities are treated. I want Annie, and others with disabilities, to be treated with care.

The final and most important value is kindness.

Interacting with Annie has taught me to be kind to others. There are a lot of people in society who do not understand Annie, and tease people who have this disorder. As a result, I have learned to show, and treat others with the respect I would want to see my sister treated. Without Annie in my life, I could have been just like those other people in society who do not understand, but she has allowed me to see people through a different lens, and respect them for who they are as people. Every person should be kind, yet there are times when people are not kind to Annie, which disheartens me.

I care about Annie more than I care about anything else in the world. Not just because she is my sister, but because she created my compassionate personality. While I used to wish she didn’t have autism, I have used this to change the way I interact with others. Annie’s influence spreads into every aspect of my life, and she has given me the inspiration to make an impact in the world around me.

As a mother, and a professional in the special needs field, this essay reminded me that siblings experience the same feelings and issues that caregivers and parents do.

And to Danny, thank you for this wonderful essay about your sister. Annie is so lucky to have you and Ryan as her brothers. You make me so proud, and my heart so warm.

Author, Danny Kelly

Danny Kelly is a senior in high school and sister to Annie Kelly, who was diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities and general anxiety disorder. Danny is actively involved in his school’s Debate Club and Future Business Leaders of America, and participates in several volunteer activities within his community.

Author, Amy Kelly

Amy Kelly, MBA, MNM, is the mother to Danny, Annie and Ryan. Annie is diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities and general anxiety disorder. Amy is the National Director of Family Engagement for Devereux Advanced Behavioral Health , one of the nation’s oldest and largest nonprofit providers of behavioral healthcare, and serves as a family representative on several special needs boards in the community, locally and nationally. In addition, she participates with other patients and families in efforts supported by the American Board of Pediatrics Foundation and the Autism Speaks Autism Treatment Network to address children with special needs and the importance of quality care.

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This is so beautiful and so very glad you shared this for the world to see and know that just because you are Autistic you still have feelings and need love .

Thank you for sharing I have two young boys one with similar diagnosis to Annie, this reminded me how lucky our family is. Beautiful words Danny! What an inspirational essay, you’re going to make a difference in many peoples lives 💕👏

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Home — Application Essay — Engineering Schools — Siblings and Strength: Growing Up with Autism

Siblings and Strength: Growing Up with Autism

• University: Santa Clara University

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Words: 694 |

Published: Jul 18, 2018

Words: 694 | Pages: 2 | 4 min read

Most big brothers can dish out advice and guide their younger siblings. My big brother is different. I can’t remember the specific time that the transition occurred, but at some point Brandon went from being my big brother to an autistic sibling in a young man’s body. Brandon was never able to guide me with words, but his disability has affected my life tremendously and, despite the challenges, for the better.

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Before grade school I remember accompanying my mom and brother to his occupational and speech therapy appointments. It never crossed my mind that this was not normal. After entering grade school I began to realize there was something different about him. Kids made comments about him, and I began to live in his shadow. It didn’t matter what I did or how I acted; it always felt like I was his sister and people who didn’t know me simply expected that I was the same. Teachers at my elementary school knew me as Brandon’s younger sister. Subconsciously I became determined to beat out their prejudice and make a name for myself. I became active in various groups and dedicated myself to school at a young age. I credit much of my current drive to this childhood need to prove I wasn’t like Brandon.

I also developed unusual maturity and independence as a result of my brother’s condition. My parents devoted most of their time to helping Brandon, such as driving him to therapy and later to his distant special education school. Although my parents always made sure I had what I needed, I was often left to do things on my own. I did my homework without extra help or prompting. I learned how to do small things such as make my own lunch when everyone else’s moms still made theirs. Elementary tasks later turned into more complex responsibilities, such as being in specific places at the right times.

As I got older, I began to mature much faster than Brandon did. He was no longer my big brother; I began to assume both the oldest child and big sister roles. For the first time my parents had to discuss extending a child’s weekend curfew and think about their baby leaving for college. I play the big sister role in that I always look out for my brother. Brandon watches everything I do, and I know he pays more attention to my actions then I once realized. Since starting high school, I have worked to lead by example.

There are days when I wish life was not this way. Sometimes I wish that my brother could be a part of my life in the same way that my friends’ older siblings were part of theirs. I get frustrated when I have so much to do after school and want nothing more than to laze around like my brother does most of the time. I used to get angry when I saw how much money my parents spent on Brandon’s school and therapies; it did not seem fair that they often denied simple things that I asked for. Being Brandon’s sister has taught me that people’s capacity for work and achievement varies greatly, and that life simply isn’t always fair.

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Little is known about the cause of autism and I worry that it could run in my genes. I also worry about my role in Brandon’s life, especially after my parents are longer able to look out for him. However, if there is one thing I that have learned from being a sibling of a disabled child, it is that you can get through anything one day at a time and that every challenge will shape you in a positive manner. Everything happens for a reason. In my moments of frustration I ask “Why me?” but other times I realize that I am more ambitious, self-reliant, and mature because of Brandon’s influence. I am proud of the person I have become because of my brother’s condition, and now I realize it is an honor – not a liability, as I believed as a child – to be Brandon’s sister.

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"The Silent Supporter"- my personal statement for the Common Application

caboard493 5 / 8   Dec 27, 2010   #1 If you cold please read over my essay for any grammatical errors. If you have creative suggestions, please tell. Overall i just need feedback. This is the essay I am using for the common application. Prompt 1: Describe the world you come from-for example, your family, community or school -and tell us how your world has shaped your dreams and aspirations. I was born the youngest of three girls, and yet I became the middle child. Every afternoon around 3:30, a yellow school bus would bring my sister home, prompting the nurse to wheel her in, and begin the daily medical routine. True, I had no ordinary family. My older sister was diagnosed with severe cerebral palsy, a neurological disorder which disabled the function of her mobility and speech skills. As a child at the age of four, I was only able to understand that she could no longer walk, talk, eat properly, or use hand gestures. Between a boisterous older sister and a sister with special needs, I had to find my place. At the age of five, I had matured and become the middle child. In this newfound role I had to notice where help was needed and assist without being prompted. At five I desired to be altruistic. Research states that the siblings of handicapped children grow to become caregivers or doctors, and indeed it was my sister who initiated my passion for the medical sciences. Unlike those who enter the field seeking affluence, I chose to enter to better the lives of others. In retrospect, the room I shared with my two older sisters was laced with medical equipment, but ironically always felt like home. With time I took an interest in the shots, meds, feeding tubes and oxygen tanks. The Medicare nurses changed often and I didn't want to wonder if the new nurse was giving the right dose for the intended protocol. It was my sister they were caring for, so I needed to know. The information was not something a child could easily understand, but I aspired to become knowledgeable of the procedures and protocols, so I worked hard to learn. At that age I discovered I could learn anything placed in front of me despite those who may believe it was beyond my capability. I had the potential, and all I needed was the drive and curiosity to realize my passion. I can remember an instance when I was sitting in the cafeteria of UC Davis surrounded by teams of the Special Olympics. I was neither afraid nor judgmental, but touched and reminded of love. In that moment, it was as if my sister had never passed, and I was surrounded by hundreds of my brothers and sisters. Having a sister with special needs caused me to admire those facing physical and mental adversities. I see promise and potential in their lives, when no one else seems to. As a child, I decided that I had to love and treat my sister no different than I would have anyone else in order for her to live an equal and fulfilling life. I never saw my sister as disabled, but instead differently-abled. I now feel it is my place to be the voice of all individuals facing challenging adversities, as it was once my place to be my sisters voice. This attitude has moved into my adolescence as I set high expectations for myself with regards to education and attending college. As I now seek to enter the field of clinical medicine and research, I understand that I will face challenges and adversity, but because I learned the lesson of perseverance as a child, I can emerge successful. Although my sister passed when I was ten, I still wish to use my capabilities to enhance the lives of others. I have this one life to live, and if not lived helping others, than what good is my existence?

zengrz - / 92   Dec 27, 2010   #2 Hi. This essay is really touching. I have read many essays about relatives passing away, but none of them has captured the emotion that you have. I like the way you talk about how your experience at the Special Olympic reminds you of your sister. Everything is in the right places. Also, it is good that you have mentioned your career interests, because personally I find it challenging. One question though: all I needed was the drive and curiosity to realize my passion. The impression that this quote gives me is that you lack curiosity and motivation and you are still looking for them. But I think this is clearly not the case. Do you mean you need the knowledge and resource/power that universities provide to realize your ambition or something? Sorry about your loss. The language you use is surprisingly simple. Looking at your essay makes me feel that I am exaggerating my own experience. At this moment, I am struggling with my essays too. Not a good sign =/ G L~

zailn 6 / 16   Dec 27, 2010   #3 I am totally moved. But I am curious: referring to your title, are you or your sister the supporter? i ask this because if you are supporting her that's very obvious but i don't think you are silent but if your sister is supporting you i can't find much information in your essay mentioning this.

OP caboard493 5 / 8   Dec 27, 2010   #4 Thank you very much. Regarding the title, I have since changed the name to The Supporter, as I played a large part in being her caregiver. @zengriz Oh i see how it could have been read this way. I meant that at the young age I realized that I needed those qualities to succeed in life so I take that and use it as my drive for everything. But I will try to re-word it to make it clearer. Also, I am also rewriting this essay as I now think I should show more than tell. When I am done, hopefully you can read it and tell me which one you think is better, as I am still unsure.

fc barca 4 / 19   Dec 28, 2010   #5 Firstly, thank you for taking the time to read my essay. Secondly, I'm so sorry about your sister, I don't know what I would do without my brother so I really admire the strength that shines through in your essay. In second to last paragraph, it's not something *as a child I could easily understand* last sentence: then what good IS my existence? Good luck!

Growing up with siblings is probably one of the craziest and life-altering blessings in life. One moment they can be your worst enemy you can’t seem to get away from, but then the next moment they can be your very best friend you’re exploring the world with. You laugh together, fight together, imagine together, create together, and explore together. I grew up with three brothers; so, yes, I was the princess or the “rose among thorns” as my dad would put it. My brothers and I have crazy memories together. We all have different personalities, different desires, different talents, and different paths in life. However, we have all impacted each other in some way or another. The one sibling who has impacted my life more than any other is my brother, Michael. Michael was born with Down Syndrome which is a genetic disorder affecting the physical and intellectual aspects of a person. Although Michael might seem a little different than other people, and it might take him longer to complete certain tasks, he is an incredible person who loves to smile and share his contagious joy with whoever he comes in contact with.

Growing up with a sibling with Down Syndrome

Growing up with a sibling with special needs presents its challenges or perhaps embarrassments at times. People have stared at my brother when we would be walking through the grocery store, poke fun at his speech, or complain about his slowness. At times it gets frustrating waiting on him to tie his shoes so that we can leave to go somewhere, or being patient with him as he repeats what he is trying to say countless times, or completing tasks for him that he can’t physically do. However hard or frustrating those things might be at times, they are completely out-weighed by the innumerable blessings Michael has brought into my life. Those things have made me nothing more than protective of my brother and have caused me to love him with such a profound love.

Michael has taught me precious truths about life that no other person could have taught me better. He has taught me that no matter how mean, rude, impatient, or unkind people are, love them anyways. Michael has such a deep, unconditional love for everyone around him. He has displayed this love in my life in countless ways. Days when I’m short and impatient with him seem like the days he shows me the most love. He is always asking about my day and remembering things from previous days to ask about. He has always forgiven me despite my shortcomings and daily failures. He folds my clothes, vacuums out my car, gives me my mail, and always remembers to have a pen and gum for me at church. His love shines through his care for me, his eagerness to spend time with me, and his passionate desire to serve me.

Not only have I been impacted by my brother’s love for me, I have also been challenged and rebuked by his unique outlook on life. Living in a society that is constantly on the go and craving the latest gadgets or advancements in job positions, Michael chooses to live the simple life. No matter what, Michael is always content and easily pleased about almost anything. When I rush through life making sure I get everything done, I can’t help but to stop and look at his life and admire his love for the simple things in life. He loves doing word searches, watching sports games, playing sports, taking naps, and reading his Bible. He’s not rushing around, desiring the next gadget, or discontent with his lot in life. He’s peaceful and filled with joy pretty much all the time.

From a sibling’s perspective of growing up with someone with Down Syndrome: I would have it no other way.

Michael’s life has taught me patience; Michael’s life has taught me true and total contentment; Michael’s life has given me an intense desire to help other children with special needs. Without Michael’s amazing impact on my life, I wouldn’t be the person I am today. He has touched my life in truly incredible ways. I didn’t have a choice to having a sibling with special needs; but honestly, having him as a sibling is probably the sweetest blessing in my life.

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Katie @ Wonderfully Made

This is absolutely beautiful! I am in tears! What an amazing journey you and your brother have shared together. Thank you so much for sharing this, Alyssa. I will be passing it on to others for sure!

Great story! It sounds like our family! We have an 8 year old son with Down Syndrome and his 21 year old sister is in grad school for Speech Therapy. We also live in Ohio and she is attending grad school in Ohio! Our 2 oldest children love and accept their brother unconditionally. We are very fortunate. Our son has taught us so much and we would have it no other way!!!

Julie Jordan Scott (@juliejordanscot)

I just found your #31days series and am so grateful! I am both a special needs Mommy and a special needs sibling. My brother had down’s syndrome and my son has autism. When my son was diagnosed my first thought was, “Oh, my little boy!” and then “Oh, my girls!”…. while I loved my brother dearly (still do though he’s been gone for seven years now) it is different having a special needs sibling. You are different, then, too. Thank you for writing these blog posts! I look forward to reading more!

I love, love, love yr article. I too have a brother with Down Syndrome. I can relate completely with everything u have said about how much he has impacted yr life for the better. My brother makes me stop and smell the roses. He is a tital blessing to our entire family and has made us so much more aware of other people and their sufferings.

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Sibling testimonial: I'm blessed with perspective, compassion because of my sisters' disabilities

By Clay Boatright

3:02 PM on Jan 5, 2015 CST

Moving into a new year is a time of transition, and for special needs families, transitions can be incredibly traumatic. In fact, the assessment forms used to determine the services people with disabilities receive include questions about transitions in the immediate family, such as recent births or deaths, divorces, or relocations.

Our family will undergo a major transition in 2015 as our oldest daughter, Blaire, heads off to college. While her mother and I will miss her uplifting style and assistance with her siblings, her twin sisters will lose the loving presence of their best friend.

Like thousands of high school seniors across the country, Blaire had to write essays as part of her college applications. The most requested one required describing a challenge in her life and how it impacted her as a person. It was raw and insightful, so I asked Blaire if she would mind sharing it as a "guest Insider" for today's blog.

Here is her take.

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By Blaire Boatright

I sit on my bed, finishing my homework, wondering if the screams outside my door are finished for the night or simply on a temporary reprieve. Suddenly the door is thrown open and my sister, Mia, runs in and climbs under the covers next to me. Her identical twin, Paige, is down the hall watching videos on her iPad.

While screaming and playing may not seem unusual in a houseful of teenage girls, what makes our family life unique is that both Mia and Paige have severe intellectual disabilities and autism. Though they are 14 years old, my sisters do not speak, cannot bathe or go to the bathroom by themselves, and often have loud, ferocious tantrums.

The physical, mental, and emotional roller coaster that my family rides has taken us to the extremes. My sisters’ physical aggression is painful, as shown in the bite marks and hair pulled by two who do not know their own strength. We have not taken a family vacation in years because the twins’ behaviors make travel impossible. Simply going to a restaurant can be an extremely stressful event, and one that we often avoid.

When I was younger, I was often embarrassed by my sisters and rarely invited friends over to visit. Using the solitude of my bedroom to isolate myself from the chaos, at times I felt lonely and less important because our parents seemed focused on the twins’ needs and not mine. Growing up in my family was extremely hard.

Having two sisters with severe disabilities has had a profound impact on my life, but as I’ve grown older, I have realized that impact is far more positive than negative. My sisters have significantly altered how I view life and relationships. For example, many people define success based on their superiority to others. It seems as though self worth in our society requires being more attractive, smarter, or stronger than those around us. My sisters have taught me that we are all unique individuals, equal to each other with our own specific talents. Competition should not be about getting satisfaction from defeating others, but challenging each other to develop our individual skills to their greatest potential.

If I did not have sisters with disabilities, I may not have the compassion for others, and sense of humor, that I have today. The ability to laugh at the bizarre things that happen in our house has enabled me to win awards at school for my constant smile and positive outlook, making other people laugh on days when they feel challenged. I often reach out to my fellow students with disabilities, making sure they know they have a friend. Five years in National Charity League has enabled me to work with underprivileged children from all walks of life. However, I don’t consider my work with them as charity, but simply one person helping another, just as I help my sisters.

I have also developed some important life skills as a result of my unique home life. Flexibility due to expecting-the-unexpected enables me to multitask with prioritized focus. My parents’ advocacy efforts have taught me the importance of understanding how systems work, developing relationships, and having the confidence to ask for help.

Though it may be hard for others to see, sisters with severe disabilities yield a blessing of skills and perspectives that will be beneficial in college, at work, and for life in general.

Clay Boatright

 is the father of three teenagers, including identical twins with severe intellectual disabilities and autism. He is past president for both  The Arc of Dallas  and  The Arc of Texas , and currently chairs the Texas  Intellectual & Developmental System Redesign Advisory Committee.

OUR MISSION

The Magpie Fund is dedicated to helping the siblings of special needs children.

ABOUT THE MAGPIE FUND

Raising a child with special needs is expensive,​ ​and siblings​ ​often lose out when it comes to vacations, extracurricular classes, and activities.​ ​It is important to​ ​recognize​ ​the sacrifices they make to improve the quality of life for ​a brother or sister with special needs.​ ​The Magpie Fund helps the siblings of children with special needs or severe medical issues​ ​by providing a $1,000 scholarship for college, camps, or other classes like art or music.

MAGGIE GRACE LYONS

Maggie was born to Scott and Kathy Lyons with a rare form of epilepsy called Lennox-Gastaut Syndrome (LGS), but to her siblings​ ​Dan and Mary Kate she was the​ ​embodiment of love and sunshine. Sadly, Scott and Kathy lost their beautiful ​​Magpie in 2016. ​​I​​n her memory​ ​they​ ​founded​ ​The Magpie​ ​F​​und with the help of their son Dan and daughter Mary Kate.

LENNOX-GASTAUT SYNDROME

Lennox-Gastaut Syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple  seizure types , moderate to severe cognitive impairment, and an abnormal EEG with slow spike-wave complexes.  This triad of mixed seizures, abnormal EEG and intellectual impairment represents one of the most difficult forms of epilepsy to treat.

For more information, visit the LGS Foundation .

Epilepsy Foundation – SUDEP

People who continue to have seizures are at greater risk of a number of complications, which is why preventing seizures and other problems is so important. The most serious complications are injuries and dying from seizures. This section gives frank information about one of the more common causes of dying from seizures called “Sudden Unexpected Death in Epilepsy,” which is abbreviated SUDEP.

INFORMATION & SUPPORT

Lgs foundation.

Improving the lives of individuals affected by Lennox-Gastaut Syndrome through research, programs & education. 

Help Awareness

Support the Magpie Fund and help us create awareness by wearing a t-shirt. All proceeds go to the Magpie Fund.

Genetic Testing

The  Genetic Testing Registry (GTR) provides information about the genetic tests for Lennox-Gastaut Syndrome.

Letter to Donors

Read our letter to donors to find out more about Maggie, why we are so passionate about this, and how you can help.

LET YOUR LIGHT SHINE

Show your support for the Magpie Fund with shirts, hats, and mugs! 

A Sibling’s Personal Essay for Admission to Law School

Statistically, siblings share the longest lasting relationships one will experience in a lifetime. Several decades of research on siblings has provided important information about the effects of being a brother or sister of an individual with a disability. Generally, sibs across the lifespan regard their experiences positively, though some fail to find positive benefits in their experiences. Still, it seems more often we see siblings expressing affection and great loyalty toward their brothers and sisters. From an early age, we see high levels of empathy and altruism because of the responsibilities and rewards of their front seat view. On the whole, sibling appear to be as well adjusted and successful as individual who have typically developing brothers and sisters.

Jace King began working as a peer mentor in autism when he was four years old and his autistic brother Taylor was ten. Jace helped kids in social skills groups, summer camps and other community programs that served kids with autism and other disabilities. At eighteen when he applied to college, he had amassed just over 2,600 hours of community service over fourteen years. Taylor has impacted Jace’s life and choices about his future in many positive ways, including his decision to share some of his experiences in his personal essay for law school admission.

Personal Essay for Admission to Law School

By Jace King

The earliest memories I can recall of my dad are him leaving early mornings dressed in a suit and a tie. I came to learn he was generally heading to court, representing individuals who were in desperate need of help. Over my lifetime, he expressed the greatest satisfaction when he was successful in doing so. Observing his efforts cultivated my own interest in the profession, where I witnessed his work to be an effective alternative to sitting idly by while inequities or abuses go without redress.

Throughout my adolescence, my many varied interests drew my focus in directions other than attending law school. I fell in love with music, art, and film; even appearing in and co-producing a couple of documentary films. I became fascinated with science fiction and dreamed of inventing a teleportation device. Despite that small setback in my life’s goals, I still yearned to do something tangible that would positively influence and help to bring balance to lives where the mere accident of birth did not provide certain individuals with equal opportunities.

Since I was very young, I was acutely affected by the struggles and pains facing others. Happily, both of my parents taught me the importance of being kind to others. Growing up with my brother Taylor, six years my elder, provided its own life lesson. Taylor did not make friends the same way I did. At three years old, I had a larger vocabulary and spoke more fluidly; and as a five-foot tall ten year-old, for reasons I did not yet understand, Taylor could not be trusted to be alone with me. One day, these differences were explained to me; Taylor had “autism.”

Taylor’s autism prompted my family into social activism. My mom took it upon herself to promote the development of my brother’s lagging social skills. She created one of the first nonprofit organizations which dealt with autism, providing resources and support for education, as well as providing a source of advocacy for parents and their children.

At four years old, I began to attend the organization’s events and to learn methods of communication with the disabled children and their families. Within the next couple of years, I began to work in a quasi-counselor role in summer camps for the children in the “special needs” programs.

At seven, I became a full-fledged volunteer, leading campers in activities such as music and story-time, outdoor games, and trips to the library or grocery store. We would go anywhere the attendees could learn and practice important social skills they, perhaps, would never learn. My involvement with these disabled children taught me the greater lesson that people just want to be talked to and treated like everyone else, no matter their capabilities or perceived limitations.

The 2008 election, along with a concurrent California proposition regarding the legality of same-sex marriages, initially drew me to political issues. Not long after, I became interested in climate change and related geopolitical issues. I sought out organizations where I could volunteer my time and energy. When I started college, I continued to devote my attention to these various causes.

I soon joined the California Public Interest Research Group, “CalPIRG,” working on various campaigns focused on voter turnout, banning of plastic bags, and petitioning to overturn the decision in Citizens United which leverages a corporation’s assets and desires over those of the people. In my sophomore year, I was co-president on the “City Go Solar” campaign which focused on increasing incentives for installing solar panels in Santa Barbara. That summer, I continued my work canvassing door to door to educate the voters on the environmental issues of “fracking.”

As I became more involved in efforts relating to social justice, I realized I needed to find the most effective vehicle to allow me to continue working on causes which I find important. Like my father before me, as a lawyer, I will have the tools to best work to promote these causes. As an attorney, I will be in a position to make substantial contributions to the pursuit of positive change and justice, working to represent the interests of people and causes who would not otherwise have their voices heard or anyone to make a stand for their interests.

Today, with an undergraduate degree from University of California Santa Barbara, at 22 years old, Jace has been accepted to ten top law schools in the country. Jace’s biggest dilemma? What school he will choose to attend and the specific area of law he might pursue. We think his personal essay was a tremendous boon to his acceptance by some of the finest schools in the country. Good on you, Jace!

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I am so proud of my son, Jace. So much of his young life was dedicated to time in waiting rooms, special activities, and masses of events in autism. The oodles of hours he volunteered for actual programs was outstanding. When he was 4 years old, he helped kids learn to cross a street, and find things in grocery stores, etc., with a relativity far beyond his young years. One time, when he was 8 years old he stopped me to excitedly say “Mommy, volunteers do NOT get paid!”

To you Jace King, my son, my muse, my beauteous, my best bun dragon ever, I love you.

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What we know about the Trump shooter

Jaclyn Diaz

Dave Mistich

Quil Lawrence

Police continue to block roads around the home of Thomas Matthew Crooks in Bethel Park, Pa., on Sunday, as the FBI continues its investigation into the attempted assassination of former President Donald Trump. Rebecca Droke/AFP via Getty Images hide caption

Four days out from the shocking assassination attempt on former President Donald Trump, authorities are still working to unravel who the gunman was and what may have driven him to act.

The FBI say Thomas Matthew Crooks, the man who shot at Trump at a Butler, Pa., political rally on Saturday, is believed to have acted alone. There is yet to be an established motive for Crooks’ actions, officials told media over the weekend.

Trump says that a bullet pierced the upper part of his right ear. One person, identified Sunday as Corey Comperatore, 50 , was killed in the attack. Two other people were also injured before Secret Service agents killed Crooks.

Investigators have said his father purchased the weapon used in the attack—an AR-style 556 rifle—and now officials are trying to determine how Crooks gained access to it.

A person familiar with the investigation who was not allowed to speak publicly said the gun was purchased about six months ago. The source also confirmed that at least one possibly workable, explosive device was found in the dead suspect's vehicle.

Robert Wells, assistant director of the FBI’s counterterrorism division, said Sunday that the bureau was investigating the incident as “an act of domestic terrorism.”

A picture is still emerging about the 20-year-old. Here’s what we know so far.

Crooks is from a small community outside of Pittsburgh

The Crooks family home is in Bethel Park, Pa., according to the FBI, a working-to-middle class community south of Pittsburgh.

Investigators said the Crooks’ family is cooperating with the investigation. Attempts by NPR to contact family members have not been successful.

The community, which neighbors describe as a “quiet” one, sits about 53 miles from the shooting site and is home to about 33,000 people.

“People kind of keep to themselves. I mean, you say hi to your neighbors,” said Jim Zawojski, 70, a retiree living in Bethel Park. But, he added, people aren’t especially close-knit.

Zawojski said he once mistakenly received mail from the Crooks house, but never engaged with the family members directly, even as he returned the mail to their porch.

“I couldn’t even tell you what they look like,” he said.

“I’m sure they’re devastated," Zawojski continued. "I am just wondering if there were any signs of how [Crooks] was acting. Was he mentally disturbed?"

Law enforcement officers gather at the campaign rally site for former President Donald Trump on Saturday in Butler, Pa. Trump's campaign said in a statement that the former president was "fine" after the assassination attempt. Evan Vucci/AP/AP hide caption

In school, he was considered a good student

The shooting has confounded those who crossed paths with Crooks.

The Bethel Park School District confirmed Sunday that Crooks was a 2022 graduate of Bethel Park High School. The district said it was cooperating with investigators and was limited in what other information it could release.

Crooks' name was included on a list of awardees as part of Bethel Park High School's Awards and Recognition Program in 2022, according to a local news report. He was listed as receiving a $500 National Math & Science Initiative Star Award.

"From background I've gotten from people that I know that have gone to school with him, he was your typical average kid — more on the quiet side, relatively intelligent," Allegheny County Councilor Dan Grzybek told WESA, Pittsburgh's NPR news station. Gryzbek represents the district that includes Bethel Park.

Thomas Matthew Crooks in an undated picture from his time at Bethel Park High School. He graduated in 2022. Bethel Park High School hide caption

Grzybek noted that Crooks was known as "a pretty decent student."

After high school, Crooks attended the Community College of Allegheny County, where he graduated two months ago with an associate's degree in engineering science, the school confirmed to NPR.

"Like all Americans, we are shocked and saddened by the horrific turn of events that took place in Butler, Pa., on Saturday. We are grateful that former President Trump is safe and recovering, and we extend our condolences to the family of Corey Comperatore on their loss, and offer our thoughts and prayers to all others who have been impacted by this tragedy," CCAC said in a statement. "As the investigation into this weekend’s events continues, CCAC will fully cooperate with members of law enforcement."

A spokesman for Robert Morris University confirmed that Crooks had planned to enroll at the small private institution outside of Pittsburgh beginning this fall, but had not yet attended classes at the university.

A person who encountered Crooks at CCAC but who wasn't authorized to speak publicly told NPR that Crooks was known as a brilliant student with a solid future ahead of him. This individual said Crooks was seen on campus and always dressed nicely. There were plans for Crooks to attend a four-year institution in the state after graduating CCAC, this person said.

Earlier this year, it was announced that CCAC was no longer offering new students to enroll in its engineering department, forcing current students to finish their programs and classes there by 2025, according to a local news report. This caused a lot of students stress, but as far as this person knew there were no behavioral issues with Crooks during his time at CCAC.

Since news of the shooting rippled through the community, the general feeling at CCAC is shock at the "senseless" tragedy, this individual said.

Samuel Strotman, a classmate of Crooks at CCAC, shared classes with him. But Strotman said he never saw Crooks in person at the school's campus. In the classes they did share over Zoom, Crooks was just a "dark screen" and said just a few words when the professor took roll call.

"I never thought I'd be in class with someone who tried to assassinate our former president," Strotman said.

Small details are beginning to take shape

Bit by bit, more minor details about his life beyond school have started to come into focus.

Crooks had been working at Bethel Park Skilled Nursing and Rehabilitation Center as a dietary aide, Marcie Grimm, the center's administrator, said in a statement shared with NPR. It's unclear how long Crooks worked at the center.

Grimm expressed shock and sadness that the 20-year-old was named as the alleged shooter.

Crooks "performed his job without concern and his background check was clean," Grimm said in her statement. "We are fully cooperating with law enforcement officials at this time. Due to the ongoing investigation, we cannot comment further on any specifics. Our thoughts and prayers go out to Former President Trump and the victims impacted by this terrible tragedy. We condemn all acts of violence."

He appeared to also have an interest in guns, having joined a shooting club just a short drive away from Bethel Park. Robert S. Bootay III, legal counsel for Clairton Sportsmen's Club, said in a statement that Crooks was a member of the gun club.

“Obviously, the Club fully admonishes the senseless act of violence that occurred yesterday,” Bootay said in a statement while also offering condolences to the family of Corey Comperatore , who died in the attack, and prayers to those injured.

After Crooks was killed, multiple news outlets have reported, a photo emerged of a law enforcement officer standing above his body. In the image, which NPR has not independently verified, Crooks is seen wearing a gray T-shirt from Demolition Ranch, a YouTube channel that features videos about firearms, demolition and experiments with guns.

After the image emerged, Matt Carriker, the channel’s creator, posted a video in which he said he was “shocked and confused to find this out.”

“We don’t vet the people who buy our shirts, obviously, it would be impossible to. Just like Nike doesn’t vet who buys their shoes,” Carriker said in the video.  “This channel is not about violence, this channel will never be and we never would condone that at all,” he continued. “I hate that.”

A possible motive remains unclear

Investigators are working to put together what may have motivated Crooks to target Trump. They are looking into his actions in the days and weeks before the shooting.

The FBI has not yet identified an ideology associated with the shooter, according to Kevin Rojek, special agent in charge of the FBI’s Pittsburgh field office who is leading the investigation into the assassination attempt.

“We don’t have any kind of fidelity right now about the shooter’s action immediately prior to him engaging the former president,” he said.

Pennsylvania voter registration and Federal Election Commission data show Crooks was a registered Republican, but donated $15 through ActBlue, the Democratic-allied organization, in 2021.

A search on Pennsylvania's public court records database indicated Crooks had no criminal history.

There is no indication that Crooks had mental health issues and investigators have found no threatening language on his social media accounts, according to Wells of the FBI's counterterrorism division. The investigation is still in its early stages, Wells said Sunday.

Investigators have had limited insight into recent communications that Crooks made—texts and phone call detail information—but on Monday the FBI said it had gained access to Crooks’ phone.

“FBI technical specialists successfully gained access to Thomas Matthew Crooks’ phone, and they continue to analyze his electronic devices,” the bureau said in a statement. “The search of the subject's residence and vehicle are complete.”

To the extent he used social media, it appears he left no major footprint.

At least one social media account associated with Crooks has been confirmed on the group-chatting app Discord.

"We have identified an account that appears to be linked to the suspect; it was rarely utilized and we have found no evidence that it was used to plan this incident, promote violence, or discuss his political views," a Discord spokesperson said in a statement to NPR. "Discord strongly condemns violence of any kind, including political violence, and we will continue to coordinate closely with law enforcement."

Kahwit Tela contributed to this report.