15 Things You Should Never Say to an Autistic

2k
2k
8

There could really be a hundred or a thousand of these, but I’ve decided to choose just 15 for the sake of brevity and not imploding anyone’s browser. All of these things have actually been said to Autistics, children and adults, and some of them are unfortunately very common. Some happen more often over the internet, and some happen more often in person, but they’re all phrases or questions that can be incredibly hurtful.

Sometimes people who say these things are well-meaning, which can make the impact even worse. Especially in those cases, people might not understand why these can be so offensive and hurtful, and occasionally insist that what they’re saying is a compliment, even when it’s not.

1. “So is that like being retarded?”

Factually speaking, Autistic people in many cases do not have an intellectual or cognitive disability, and many people with intellectual or cognitive disabilities are not also Autistic. There are some Autistic people who also have an intellectual or cognitive disability. Nevertheless, the word “retarded” is often very hurtful for Autistic people, as it is frequently used as an insult to dehumanize people with developmental and intellectual disabilities. The r-word is often used to express hatred for people with disabilities. Please don’t use it.

2. “You should be very proud of yourself. You seem so normal. I couldn’t tell you’re Autistic.”

While this might be rarely said to Autistic people whose disability is very visible, it is very frequently said to Autistic people with much more invisible disability. It’s insulting because it suggests that because the person doesn’t appear to be disabled or doesn’t fit preconceptions of what Autistic people are supposed to sound or act like, that person must therefore not have a disability or be Autistic. It also suggests that “normal” is the standard to which anyone should aspire to appear or act (and that “normalization” should be the ultimate goal of therapies or treatments for autism rather than pragmatic coping skills to navigate a world where Autistics are a minority), and therefore that it’s not good to act or speak in ways commonly associated with being Autistic, even if those behaviors don’t actually hurt anyone. This is dismissive of a person’s disability and experiences.

3. “You must be very high-functioning.”

Many Autistic adults take issue with the “high-functioning” and “low-functioning” labels for a variety of reasons. Some people have received both labels but at different times in their lives, and many Autistics have uneven skill levels — some people who might be able to articulate their ideas very well at a conference may be unable to travel alone or cook for themselves, while some people who are unable to communicate with oral speech might be able to live independently. That debate aside, this is also dismissive of a person’s individual experiences with disability. Unless you know someone extremely well, you have no way of knowing what specific adaptive functioning skills or life skills a person has or what their needs and challenges might be, and it’s not possible to acquire that information simply by looking at a person.

4. “You’re not like my child; you can write a blog post. My child will never be able to write a blog post.”

Not everyone who can write a blog post can live independently, tend to their own activities of daily life, get and keep a job, complete higher education, travel alone, communicate with oral speech or manage their own finances. The ability to write a blog post says absolutely nothing about a person’s needs and challenges, and how disability might affect an individual person. There are people like Amy Sequenzia, Larry Bissonnette, Mel Baggs, Tracy Thresher, Hope Block, Sue Rubin and Carly Fleischmann, all of whom are non-speaking Autistics or people with autism who have given presentations at conferences, written blog posts, written letters to the editor, published articles in newsletters or journals and visited legislators. Other people, like Kassiane Sibley and Kathryn Bjørnstad, who are frequently touted as “high-functioning” because of their blogs, do not have consistent adaptive functioning abilities.

5. “I know a kid whose autism is really severe. You don’t seem like him.”

Every Autistic person is different from every other Autistic person. Among Autistics, there is a huge range in individual abilities, skills, needs and challenges. It is impossible to know what an Autistic’s abilities and skills versus needs and challenges after a brief conversation either in person or in the comments thread of an internet post. What makes Autistic people a group united by a shared diagnosis are the commonalities of all Autistic people. All Autistic people share some of the same core characteristics that define autism — key differences in neurological functioning, sensory and cognitive processing, and communication abilities that often manifest as disability. Autistic people are Autistic regardless of whether they look, speak or act like another Autistic person you know or know of.

6. “Can you have sex?”

Yes, Autistic people can have sex. Some get married and have children. Some have Autistic children. Other Autistic people might never be taught about sex, for a variety of reasons. Autistic people, like all people with developmental disabilities, are at much higher risk for abuse or victimization — sexual or otherwise — than the general population, but that doesn’t mean Autistic people don’t know about or can’t have sex.

7. “Does that mean you’re really good at math/computers/numbers?”

If there’s one thing that’s likely to offend an Autistic, it’s seeing them in terms of common stereotypes about autism. A very small minority of Autistics are also savants. Many Autistics have higher than average measured IQ, and many Autistics have measured IQ that falls right into the median, while still others have an intellectual or cognitive disability. Some Autistics have dyscalculia or similar learning disabilities and actually find math to be extremely difficult. Other Autistics, including those who might be good at math, simply don’t like it. And yes, some Autistics happen to be excellent with math and enjoy working or studying in related fields. There are Autistics who are relatively computer illiterate as well as Autistics who thrive in the IT world and community.

8. “But you’re married/have a job/go to college. You couldn’t do that if you were really Autistic.”

Yes, it’s true that every Autistic isn’t going to get married, have a job or go to college. But plenty of Autistics do get married, have jobs or go to college. This statement is insulting because it’s ableist. (For those who may not regularly read my blog, ableism is like racism, ageism or sexism, but directed toward people with disabilities.) While not every Autistic person may be able to do all or some of these things, it’s very ableist to assume that no Autistic person can or that anyone who can must not be Autistic.

9. “Do you take any medications for that?”

This is a very personal decision. Some Autistic people take medications for various reasons, and some do not take any medications. You wouldn’t ask a stranger if they’re on medication for anything, so you shouldn’t ask an Autistic person whom you don’t know very well if they takes medications either. This is rude to ask someone, especially someone you do not know well. The only context in which such personal questions are appropriate with strangers or acquaintances might be during a conference or panel presentation where the Autistic speaker is specifically speaking about their experiences.

10. “You have no right to claim to speak for severely Autistic people who can’t speak for themselves.”

Firstly, there are non-speaking Autistics who can speak for themselves. People like Amy Sequenzia, Larry Bissonnette, Mel Baggs, Tracy Thresher, Hope Block, Sue Rubin and Carly Fleischmann are all non-speaking and they can speak quite capably for themselves. Secondly, while every Autistic person has different abilities and needs, that does not mean that Autistic people who may present as highly verbal or invisibly disabled cannot speak to the commonalities that they have with Autistic people who do not present the same way as themselves. Any Autistic person will understand another Autistic person’s experiences far better than any non-Autistic person by nature of also being Autistic. That doesn’t mean I should be advocating for your child in their school (unless you ask me to do that, it’s not my place), or that I know your child’s particular quirks or personality, because unless I actually spend time with your child, I don’t and won’t. It does mean that I share the way your child experiences the world and can speak to that.

11. “Can you please not flap/rock/spin/jump in public? It’s embarrassing.”

Flapping, rocking, spinning, jumping or other stimming (calming behaviors), in the vast majority of cases, hurts neither the person doing it nor anyone else nearby. There’s nothing wrong with stimming, and this statement communicates that the Autistic person should stop acting like themselves or stop moving in ways that come naturally and instinctively. It’s offensive, and for some people, could be triggering (psychologically and emotionally traumatic).

12. “You mean you are a person with autism. You are a person first, not a disability or a disorder label.”

Some people on the autism spectrum do prefer to be called people with autism, and if talking to someone who does, you should call them a person with autism. Many of us, however, prefer to be called Autistic or Autistic people, and if you are talking to someone who prefers to be called Autistic, you should also respect their preferences in referring to themselves, and call that person Autistic. Everyone has the right to decide how they would like to be described, and you should respect that right.

13. “What’s it like to be Autistic?”

Just as it would be improper, rude and demeaning for someone to ask me what it is like to be Asian, it is improper, rude and demeaning to ask people belonging to any marginalized group what it is like to be the way that they are. You shouldn’t ask someone you don’t know well what it’s like to be Autistic outside the context of a conference or panel presentation about that person’s experiences — in which case, more specific questions might actually be better and more effective — and if the person is someone you know well, you still should refrain from any variation on this question if the person has made it clear that the topic is an uncomfortable or off-limits one. Besides, every Autistic person’s experiences vary so much that it’d be an injustice to all of us for you to ask a question that implies that there’s one way to experience being Autistic. While we share certain characteristics and experiences of the world, our life stories and our experiences with people and ableism are vastly different.

14. “Have you ever heard of Temple Grandin? Her books are really amazing!”

The answer is almost always yes. But it gets very tiresome for Autistic people to constantly hear about Temple Grandin day in and day out. There are many prominent Autistic people in diverse fields and known for a variety of accomplishments, and it’s annoying to be constantly compared to the one same person all the time.

15. (Asking a question about the Autistic person to a parent, support person, aide, sibling, or friend who is standing or sitting beside the Autistic person)

Please don’t talk about us as if we’re not in the room when we’re sitting or standing right here. Just don’t. The message that that communicates to us is that we don’t matter and can’t possibly have anything meaningful to communicate.

Lydia Brown holding a sign that says Autistic & Proud in rainbow letters at an outdoor rally for Disability Pride Philadelphia, July 28, 2012.

Other articles to read:

S#!T Ignorant People Say To Autistics by StimNation
What to say, and not say, to an autistic adult by Kassiane Sibley
Things you should never say (or think) when you learn that someone is Autistic… (Introduction to Ableism) by Sonnolenta

Follow this journey on Autistic Hoya.

2k
2k
8
JOIN THE CONVERSATION

This 13-Year-Old Is About to Talk to the Pope About Autism

3k
3k
0

This teen is about to have a very special meeting.

Jake Edwards is a 13-year-old with autism from Montgomery County, Maryland, CBS News reported. He is also the Autism Ambassador of his county, meaning that he works with local law enforcement to help them better understand autism.

There are many different forms of autism, if someone doesn’t talk maybe it’s because they can’t. If someone doesn’t look at you, maybe it’s too painful for them,” Jake explained in a speech to law enforcement, CBS reported.

Jake’s work on behalf of people with autism is now getting some recognition — on Monday, September 21, Jake and 13 others will be honored as Champions of Change at the White House. Then, on Wednesday, September 23, Jake will meet with Pope Francis.

His meeting with the Pope is on behalf of the Archdiocese of Washington’s Special Needs Ministry and Jake says he will talk to the Pope about his blessings and how thankful he is, according to his blog.

Get more on the story in the video below: 

3k
3k
0
TOPICS
JOIN THE CONVERSATION

5 Reasons I’m Grateful for My Life With Epilepsy

281
281
0

11222471_1169193843094878_1197505741410825500_n I was in my mid-20s when I had my first seizure — quickly followed by a second and a round of hospitalizations, monitoring, drug adjustments, eventually leading up to both a partial lobectomy and a vagus nerve stimulator (VNS) implant. I’d be lying if I said I didn’t have days when I wanted to blink my eyes in wonder at a miracle cure, one that preferably came in a sparkly purple pill. The truth is, I’m grateful for this life, and I remind myself to take pleasure in the fact that:

1. I’m more informed about my body than ever.

I’m my own best advocate, and one of the ways I practice self-care is by learning about my disease, as well as the human brain. While some doctors don’t like when patients are Google-happy about their diagnosis, I’ve never hesitated to research every drug going into my body or every procedure I’m about to undergo. I’m also lucky to have a doctor who will answer all of my questions honestly, without judgment.

2. I know who my real friends and family are.

Life with epilepsy is hard —physically, emotionally, financially. It’s not surprising to see friends drop out because you cannot keep up with your old lifestyle — alcohol and late nights can now be triggers and dangerous to your health. Not everyone understands what it’s like to pay up to $500 a month for medications. Some family members just can’t see you “that way” — in a hospital bed hooked up for EEG monitoring, during a seizure or out of sorts from adjusting to new medications. But some friends and family will stick by you. These are the treasured ones — the ones who will stay with you for the entire 19-day brain surgery, the ones who will keep calling when they know depression in a blanket you can’t shake off, the ones who know what a homemade cake can do for the broken down.

3. I’ve learned scars are just tattoos with stories behind them.

This year, I started wearing my hair and scars with pride. First, by shaving off the sides of my hair and then by dying it purple, wearing it in a side swept fashion. It’s the first time in 10 years that I’ve been able to see the scars the partial lobectomy left me with: three clean slices. What I once feared I now am eager for people to ask about. Every time someone tells me they like my hair, I respond by letting them know purple is the color for epilepsy awareness.

4. I’ve managed to become both a full time poet as well as epilepsy advocate.

Being a full-time poet is not easy. When I say “full-time,” I mean I have no excuses — I can devote a block of time every day to my writing. I’ve been given various opportunities through poetry to advocate for epilepsy as well as disability awareness. I’ve had the chance to head up workshops on disability, host readings and have even flown cross-country to help raise money for epilepsy awareness. All through the power of my words.

5. I’m stronger than I ever was.

Every day I wake up is a day I defeat epilepsy. It’s a day I win, a day I take back control of my life and my person. It’s a scary thing, to live with what feels like a time bomb in your brain, one that constantly resets itself. Still, I do my best to live above that fear.

Do you have a story about your experience with epilepsy? Please send it [email protected] include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

281
281
0
JOIN THE CONVERSATION

7 Reactions an ‘Autism Parent’ Has to a Food Company Changing Its Packaging

0

It’s a moment many parents of children with autism dread — finding out a company that makes one of the few foods your child loves has changed packaging. OK, we’re being a little dramatic here, but in all seriousness, for parents deeply invested in making life as comfortable as possible for their kids, a change like this is a big deal.

Because of sensory sensitivities, people with autism often have specific foods that feel and taste good. Many people also find great comfort in routine, so when packaging is changed, it can be jarring.

With that in mind, there are many perfectly reasonable reactions for any parent of a child with autism to have upon discovering a food company has changed its packaging. Here are just a few of them.

1. You panic

“What are we going to do?! My kid’ll starve!”

2. You feel like crying

“But that was her favorite snack…”

3. You buy in bulk all the products with the old packaging

“We’ll build a cellar and fill it with Cheez-Its.”

 

4. You bargain and explain the situation to your child

“Just try it. It’s just the packaging, the food is the same! It will taste the same!”

5. You bargain and explain the situation to the company

“What do you want from me? An arm? A leg? I’ll do anything…”

 

6. You get creative

“I’ll just save the old packaging and keep filling it up… I am a master of disguise.”

 

7. You find them a new favorite snack and pray the packaging never changes

“Thankyouthankyouthankyouthankyou.”

 

What’s your reaction in this situation? Let us know in the comments below. 

0
TOPICS
JOIN THE CONVERSATION

To the Daughter I Feared Would Have a Disability Like Mine

160
160
3

I remember the moment I fell in love with you. It wasn’t as soon as I saw the positive result on our pregnancy test, it wasn’t during the weeks I spent the majority of the time hugging our toilet, it wasn’t when I developed heart burn for the first time in my life or suddenly couldn’t go five seconds without having to pee. It was when I got my second trimester sonogram and could see clearly that you were a real baby, a little human – it was when I heard the sonogram technician whisper to me, “It’s a girl.” My eyes filled with tears, my heart exploded and I immediately thought, I love her. Followed closely by a smaller thought, I hope she isn’t like me.

I have a learning disability, which all but defined my childhood. I also had a pretty bad speech impediment and went through five or six extremely frustrating years of speech therapy. Not only was it almost impossible for me to read, but it was difficult for me to pronounce things correctly – almost 30 years later I still remember the horror of attempting to read out loud in front of my kindergarten class, how it felt when the other kids laughed at me. I wasn’t good with social interaction, to put it mildly. I was singled out, ridiculed. When I was 5, a group of fourth grade boys beat me up. They pulled out my hair and made me eat sand. All because I wanted them to play with me, and I couldn’t pick up on the fact that they didn’t want me around until it was too late. I had great parents and teachers who worked with me, and though I was never a straight-A student, I learned to read, write and talk, and my speech has improved to the point that most people don’t notice I still have a problem pronouncing g’s. As an adult, I like that little quirk about myself. It reminds me of the little girl I once was, the difficulties I overcame, and if anyone were to make fun of me for it today – it wouldn’t hurt me. I survived summer school, tutoring, speech therapy, the days when I couldn’t make it through a school day without crying.  I’ve made it through years of depression, anger, eating disorders, victimization. I’m a better person now because of my struggles; I wouldn’t trade them. But I never wanted that for you.

10403167_10100167799502254_7572972799885207748_n You met all of your developmental milestones on time or early. You looked so cute walking around at 9 months old, without a hair on your head. When it was time to talk, you talked. A lot. You used big words, you talked in sentences. You knew all of your colors and your ABCs when you were 2. I allowed myself to hope, to let out the breath I hadn’t been consciously aware I was holding since the day you were born.

When you turned 3, you started to experience what I thought at the time were just tantrums. You were my first child; I don’t know if I really believed  it was normal or if I just couldn’t admit to myself that I knew it wasn’t. You would get mad and dissolve, pull your own hair, pinch yourself. You would scream for hours, lie on the floor and thrash your entire body. There was nothing I could do to help, nothing I could do to stop it. Sometimes, your tantrums lasted for hours. Sometimes, you would have more than one a day. I refused to even think that something was wrong. If anyone suggested to me there was a problem, I would let them know in a colorful way there was nothing “wrong” with you. You were just a little kid. It was normal. I waited for you to grow out of it.

Three turned to 4, 4 turned to 5. I gave birth to your little sister. You adored her. So did I. You both grew. You started school. When we went to open house or to parent/teacher conferences, I looked at your papers and I was proud. I tried not to notice how different they looked from those of your classmates, how your words weren’t formed right, how some were huge, some were tiny, some were capitalized and some were not. You left vowels out of everything. You wrote letters backwards. I hesitantly asked your teacher if that was OK, and she reassured me it was normal for your grade level. I let myself believe her because I didn’t want to think of you struggling. I waited for you to grow out of it.

As your sister grew, I waited for her to do the things you’d done at her age. I waited for her to start throwing tantrums so severe that I worried about the structural integrity of our house. I waited for her to try to hurt herself. I waited for her to lose herself in her emotions, to dissolve into tears and screams and anger. But while you continued to do those things, from kindergarten, to first grade, and then to second grade – she never did. At school, they started pulling you out of class to give you extra help in reading and math. You started to come home crying, telling me the other kids were making fun of you. During second grade, you went as far as faking incontinence to get out of school. The school told me you had a UTI; I didn’t believe them, but I took you to the doctor anyway. They tested you and everything came back clear; they said it could be behavioral. But I already knew that.

I wanted to live with you in denial for as long as possible, keep us both in a safe little bubble where I could believe you would never know what it felt like to feel stupid, to feel less than. I never wanted you to know what it was like to try as hard as you could try and still get a bad grade. I never wanted you to know the sinking feeling you get in the pit of your stomach when you realize someone you thought was being nice to you was really making fun.

All I’d ever wanted was for things to be easy for you. But eventually that changed, and I wanted to find you help. I wanted to find answers; I wanted someone to tell me what to do. For over a year, we went to school meetings, doctors’ appointments, therapy appointments. We heard things like, “She just needs more time with you,” “The school evaluation says nothing is wrong with her, she doesn’t qualify for services,” “There isn’t a big enough deficit,” “We don’t test for dyslexia,” “She doesn’t act like that at school,” just to name a few. I became obsessed with the Individuals With Disabilities Education Act (IDEA) 2004 and Section 504; I spent hours a day reading laws, typing your symptoms into every search engine I could find. We were met with one dead end after another, while you just became angrier, sadder and farther behind.

Finally, just a few weeks before you were supposed to start third grade, my searches led us to a neurodevelopmental pediatrician. They gave us a packet of papers to fill out before your appointment. I filled out those, and then I compiled a detailed history of your life and issues from birth to age 8. I included everything, even things I thought didn’t matter. Instead of rushing through your appointment, this new doctor listened to everything we said. He read the information I provided, he talked to you, and he started testing you. While he was testing your reading, he was purposely invading your space to see how you would react. He made jokes but kept a straight face to see if you could pick up on his sarcasm. I watched you so closely to see how you reacted, to see what answers you gave to his questions. I worried he would miss the little things that pointed towards the bigger issues. But every time I looked at him he was already looking at me as if to say, yes Mom, I noticed that, too.

You were diagnosed with dyslexia and an anxiety disorder on that day. I can’t explain the way I felt. It was the strangest mixture of relief, joy and sadness. Relief because finally, after years of trying, we’d found someone who wasn’t afraid to give us a straight answer, because our searching was finally over. I felt like a weight had been lifted off my shoulders; all of the late nights of obsessing about laws and possible reasons behind your issues had paid off. Joy, because I knew I now had the tools I needed to get you the help you deserved and needed to thrive. Sadness, because you and I cannot live in our safe little bubble of denial anymore.

There will be times when you want to give up, and that is OK. It’s OK to give up. Sometimes, it’s all you can do. But you’re strong, and I know you will be able to pick yourself back up and keep going, and if you can’t, I will be there to help you stand up. There will be times when you wonder why you can’t be like everyone else, why things can’t come as easy to you as they come to everyone else. Always remember everyone has their struggles and a person is not defined by the things they find difficult.

I promise to do my best to look beyond your anxieties and your difficulties, to see you’re just a little kid who wants to have fun, that although the things you’re going through are familiar to me, you’re going through them for the first time and they’re new and scary. I promise to put away the things I learned through my own difficult experiences and to see you as your own person who will have her own struggles, her own triumphs and her own unique life, who has to learn the lessons of life on her own terms, in her own time. I promise to always be there to lend support and to never forget that before I’m your teacher or your therapist – I’m your mother. The most important parts of my job are just to offer you my arms to lay in, a safe place to come home to and lots and lots of love.

If I could go back to the moment I fell in love with you, to the first time I worried you may struggle with the same problems I’ve had to learn to overcome, I would tell myself not to worry.  Yes, there will be sadness, frustration and anger along the way. But through those emotions you will be given many chances to learn just how strong, smart, beautiful, funny and unique you are. You may think it’s a bad thing, to see the world differently than your peers do. But I can assure you, someday the very things that make you stand out, that make it hard to fit it, will be the things that draw people to you. While they will not be your defining characteristics, they will be the things that make you into the amazing, independent, strong-willed, compassionate and wise woman whom I’m already beginning to see forming. You were not made to fit it but to break the mold. And I don’t know why I ever thought that was something I needed to worry about.

160
160
3
TOPICS
JOIN THE CONVERSATION

What Was Impossible to See on Diagnosis Day, I See Clearly 3 Years Later

25
25
1

It’s been three years since we stood in a front of the geneticist who gave us a diagnosis we never heard of: trisomy 5q. All sounded so unreal. I kept repeating that word in my head. Trisomy. It was nothing I’d imagined hearing. Then again, what exactly did I want to hear? Even today I’m unsure. What she has doesn’t have a cure, and we didn’t know how it would impact her life.

I remember my head spinning, my heart racing, staring at her, tear after tear falling and the specialist handing me one article from the internet as an explanation of her diagnosis. She had a copy in one hand and read it out loud to us.

My daughter’s diagnosis came from a printer. One article was found about it.

Stepping out of the office, I was at lost. Where do I go from here? Where do I go from “your child has heart issues” to “your child has a rare trisomy”? How do I tell others? Do I have to tell others? Trisomy means delay; it means people not accepting differences; it means many health issues. I could only see the bad while holding such a beautiful human being in my arms. I couldn’t imagine the worst, but at the time, I believed I had to.

When I heard she may not walk or talk, and she may be severely delayed, I didn’t know what to expect. It wasn’t just a parent’s job anymore; we had to have a team of specialists. Our home was invaded by strangers who wanted my little one to succeed, too. Strangers to this day I can count on when in doubt of something.

This month marks three years with an actual diagnosis. That little girl who wasn’t going to walk according to some doctors is now trying to run. Next month it’ll be a year since she started walking.

That little girl who woke up at all hours to eat just like a newborn now gets 12 hours of sleep. Today I can be thankful for her feeding tube, when originally I doubted if we made the right choice and if by placing it, if she would ever eat orally.

I once was ashamed to tell her story, afraid people wouldn’t get it. Afraid of her differences and acceptance from others.

Today I can tell her story without any hesitation. Today I’m trying to make a difference for the next parent who gets the same diagnosis so they don’t ever feel lost.

If you Google trisomy 5q today, you won’t find just one article — you can find several. This is because of those who believe our story is worth sharing, those who believe being different is beautiful.

I’ll be forever thankful to amazing organizations that believe in our children’s differences and do everything for those kiddos and the world to know about them. I’ll be forever thankful to amazing photographers for taking the time to capture my little one’s magic. I’ll be forever thankful to the specialists who believed in my child and made sure her needs were met.

Unless you’ve lived it, you can’t imagine how difficult it is to hand your child into a surgeon’s arms, spend nights in hospital while holding your little one’s hand and praying things will be OK.

Unless you’ve lived it, you can’t imagine how hard is for some people to see your child the way you see your child. She’s simply amazing. Despite all the health issues, the delay, the fights to eat food orally or to get a sound from her, she is happy, and today, I truly know this is all that matters — knowing she’s happy.

I couldn’t see all of this three years ago. I imagined the worst.

Today, I make sure she’s heard. I am her voice until she can be her own. I am her nurse, her therapists when they’re off-duty, agenda-keeper, tear-dryer, her arms she comes to when needed, the one who protects her and makes sure she knows no matter what difficulties she may have her way, things will be OK. I couldn’t ask for a better child to guide me through motherhood.

Today, I can’t picture her any differently than her own little self.

It would be a lie if I told you my heart doesn’t ache when a typical 3-year-old comes to me and tells me stories when she isn’t able to yet. But in her own little way, she tells me what she wants, and I can only be thankful for that. I know her favorite songs, I know what she wants by a simple gesture and I know what makes her happy — you can’t beat that.

I wish I’d known three years ago when I left that office in tears that things would be OK, that the road will be long, that she would go through more than most people go through in a lifetime — but that our lives with a miracle would be pure joy, that I would be proud of all she has accomplished.

That day, I apologized for her diagnosis, I apologized for all the things she may or may not be able to accomplish on her own. Today, I just want to apologize for ever doubting her, because she isn’t defined by her trisomy 5q — she’s just who she was meant to be all along.

Happy three years of diagnosis, baby girl. My life is just way better with you in it. You’ve taught me way more than I ever thought you would. You’ve been my best teacher all along.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

25
25
1
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.