When a Man Called My Son Having Autism a ‘Tragedy’

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He nearly stumbled over the stroller, the elderly man with the kind eyes who apologized, then bent down to speak to my son, Justin. “Hi there, buddy!” he said exuberantly, then put up his hand for a high-five.

Justin simply stared at the proffered hand, then glanced away.

The man looked up at me quizzically, and I responded with, “He doesn’t talk — he has severe autism,” and as I watched, his face crumpled in dismay.

“I’m so sorry” he said. “That’s a tragedy. God bless you.” He straightened up and walked away.

And as I watched him stroll to the canned goods section the words flowed into my mind, if not my mouth: “My son is not a tragedy.”

My son is not a tragedy.

Are there aspects of my child’s disability I find tragic? Yes, there are. I will always lament the fact that he will be on this earth for half his life without his parents to care for him, nurture him, love him. Even though I’m aware that he may have competent caregivers for those decades, I still find it heartbreaking to think he might miss us, might wonder why we no longer visit him. I worry his caretakers might miss medical issues, might not feed him well.

I worry they won’t love him.

I am confident these concerns will follow me to my grave.

But that’s where the tragic element of my son’s autism ends for me.

I no longer regret the more traditional trappings of the life I’d envisioned for my son. When I carried him in my womb, I took for granted his life would include college, career, friends and a partner who would cherish him. There are days when I still ache for those things for my son. But over the past few years, I’ve begun to see that needing those traditional milestones to achieve happiness is my issue, not his.

After many years, my son is mostly joyful, ebullient. My child, who generally wants to be home and playing with his DVD player, doesn’t need his mother’s dreams to be content, fulfilled. He is smart. He reads. He rides horses passionately. He loves his little brother. He adores popcorn and movies and everyone at his school. He shares his joy of the world in ever-abundant kisses and hugs. He embodies kindness.

He’s made his own life, contoured it to his own wishes.

And if I could go back to that grocery store and conquer the lump in my throat, I’d tell that well-meaning but mislead man just this.

My son, my beautiful boy, is not a tragedy.

He is a triumph.

Follow this journey on Autism Mommy-Therapist.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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.

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When You Feel Guilty About Disciplining Your Child With Medical Issues

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Let’s admit it, folks. Discipline is a tough subject to talk about when you live the hospital life. The reality is our little ones aren’t always on their best behavior, whether they’re sick or not. Though it’s a difficult topic, and there are many schools of thought, let’s blow this topic wide open. When you’re raising a child with medical issues, discipline seems so much more difficult. Your kiddo is sick, and not just any kind of sick, life-threatening sick. So how do you get to the discipline through all the guilt?

My daughter, Lyla, was 15 months old when she was diagnosed with neuroblastoma. It was a tough age for hospital life. She was all about exploring, learning and testing boundaries. There were times when she had energy just like any other child and had to be told “no.” As her mom, I didn’t want to cause her any more tears than she already let out. We would often feel guilty, thinking she would end up back at the hospital. It was an emotional struggle, but for my husband and I, the solution was clear. Not knowing the outcome of Lyla’s illness, we decided to stay positive and remember there was a chance she would pull through. What kind of child do we want her to be?

Discipline can be the difference between raising a respectful, compassionate and grateful child or a bratty, spoiled, entitled little one. Our job as parents is to love and care for our kids, guide them and teach them wrong from right. Whether our children are ill or not, it’s our job raise them with gracious, respectful qualities and a grateful attitude. Here are our suggestions on how to discipline a child with an illness:

1. First and foremost, always make sure discipline comes from a place of love.

If you or your little one feel upset, wait a little while and cool your jets. It’s amazing how quickly we can stoop down to a childlike level, so it’s best for everyone to have a cool and calm head before disciplining your little one.

2. Use your words and explain why.

It’s easy to underestimate their level of understanding, but even toddlers can understand sentiment and tone. Explain what they did wrong, taking their age into account. Tell them how it made you feel and why they shouldn’t behave that way.

3. Make sure you and your partner are on the same page. Be a team.

Talk about discipline before matters come up and be a united front. This way, your intuitive little one won’t perceive a weak link in the chain. They can wear your down! So try to avoid them from figuring out who is the one aching to give in.

4. Always follow through.

Most of our kids are already home-bound or hospital-bound, so maybe that means their discipline won’t extend as far as a child with less limits. But if you say no, follow through. If you set a time limit on their iPad, follow through. Kids learn very quickly, so if you say something, stick to your word.

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5. Fight the guilt.

Our little ones are capable of learning manners, having structured time for learning and many other wonderful things. As parents, we can find so many things to delight them. A little guidance and discipline won’t make them hate us, and they will appreciate it as they grow older.

6. Be strong against outside opinions.

There is no precedence for raising a child with medical needs. So many of your friends and family (especially family) will have no idea how to handle behavior issues. In fact, they may be shocked to know you set limits and teach them manners because so many people feel bad for them. Don’t be one of those people. Your kids are strong and courageous. There is no need to pity them. They are just like any other child with hopes, dreams, fears and joys.

7. Last but not least, always do what you feel is best for your child and their circumstances.

There are no set rules for this life we lead and no one way on how to do things. Some kids live in the hospital or aren’t allowed to leave the home. Some have much more freedom. There are some children who can engage in more activities than others, but may be restricted in socialization due to medical or immunity issues. Come up with a personal plan of action and stick to it.

I believe the biggest and perhaps most important aspect of disciplining a child with a major medical illness is never to feel bad for them.

Follow this journey on Hey Little Fighter.

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23 Unique Lessons Parents of Children With Special Needs Have Learned

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Parenting is an incredible journey full of challenges and lessons. When your child has special needs, those challenges and lessons may present themselves in ways you never expected. We asked our readers to share with us some of the unique lessons they’ve learned along their special needs journey.

This is what they had to day:

1. “Having a special needs child is not a punishment or curse. It’s a huge blessing. We wouldn’t have met so many awesome people. People who don’t know or love a special family… they’re missing out. Our community has a heart of gold!” — Ann Martin

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2. “I learned to be focused with my time and to schedule and prioritize events, therapies and expenses like crazy.” — Karen Hunt

3. “I can survive much more than I ever knew possible.” — Facebook user Hardlybored

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4. “The professionals aren’t always the professionals when it comes to my child. I’m the professional when it comes to my child.” — Jodi VarKonda Weldon

5. “[I’ve learned] to stop comparing my daughter to other kids. I was ‘gifted’ and competitive in school, so I was curious and excited to see how my kids would do in school compared to other kids and my own experience. Instead, I’m solely focused on her and what she can do and what she’s working on, not anyone else’s kids and their achievements.” — Morgen Stalion

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6. “There is never any reason ever to judge someone else. Whether it’s the parents of a 3-year-old at a restaurant who let their child play with an iPad throughout the entire meal and is only offered a milkshake, or the mom of a 23-year-old who refuses to turn off her cell phone at the movies in case she’s needed, whether it’s a child with ‘no respect’ or an adult who isn’t in a wheelchair parking in the disabled spot. You never know what someone’s situation is or why they do the things they do.” — Leah Sturdivant

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7. “Before having a special needs child, I truly do not think I stopped and appreciated the little things. The little things are now what keep me going. My son has an undiagnosed neurological disorder that requires him to breathe on a ventilator. I’ve learned that every moment counts and [there are] moments I’ll never get back again.” — Kelsey Rindels

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8. “I am an amazing advocate and I can and do move mountains for my kids.” — Shaneen Powell

9. ” [I’ve learned] how much (a whole lot) love a nonverbal child can express without words.” — Rhiannon Elain

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10. “Slow down. Appreciate every milestone for the huge accomplishment it is.” — Amy Jackson

11. “I am more adaptive and creative that I ever knew was possible” — Stephanie Jones

12. “There will be times when things get hard, damn hard… But you’ll be able to keep going, long after you thought you wouldn’t be able to.” — April Shaw

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13. “[I’ve learned] how hard you have to push and how not to give up.” — Jill Garcia Kramer

14. “[I’ve learned] how much joy and overwhelming happiness one being can bring to my life.” — William George

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15. “Resiliency.” — Rosa Canal

16. “[Special needs parenting] is not as difficult as people make it out be or as difficult as I expected it to be.” — Tala Rifai

17. “[I’ve learned] how much of a fighter I really am. I’ve always been a ‘keep the peace’ person, but not when it comes to my boy’s care.” — Amy Bishop

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18. “[You’ll learn] who your friends really are.” — Kelly Nelsen

19. “Compassion. It’s not like I was heartless before, but my eyes have been opened to a world of people who embrace challenge. For that I am thankful.” — Sherry Mitchell

20. “[I’ve learned] how to love fiercely and unconditionally.” — Marybeth Mitcham

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21. “[I’ve learned that] not everything is what it seems.” — Lee Taylor-Elliott

22. “Advocacy goes well beyond the specific diagnosis. It goes as far as advocating [for] heart, compassion, empathy, understanding and inclusion. It’s not only advocacy for your child but for yourself. When I went in to parenting a special needs child, I had no idea what went into standing up and fighting for my child and their rights. Now I see it is a whole mind, body and soul advocacy that takes a lot of effort. It’s so worth it though.” — Ali Mygrants

23. “There is no such thing as a ‘typical’ child.” — Judi Garabo Hayes

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*Some answers have been edited and shortened for clarity and brevity. 

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Man With Schizophrenia Takes You Into His World With Powerful Self-Portraits

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At the age of 7, photographer Yospie Cardoso was diagnosed with schizophrenia. Until four years ago his life was a series of psychiatric hospitalizations. And while he’s been interested in photography for as long as he can remember, two years ago he started putting himself on the other side of the lens, taking intimate self-portraits to give the world a glimpse into his life as a man living with schizophrenia.

Photography helps him hold on to what’s real.

“It’s been a chance to show people my experiences,” he told The Mighty. “When you tell people you have schizophrenia, they automatically think you’re crazy. I want people to understand and stop looking at the stigma of it.”

Cardoso, who has three children, 12, 7 and 5, says their genetic susceptibility to mental illness was a big inspiration for the project.

“A big fear of mine is that my issues would be passed on to them, so I started this as way to show them they’re not alone if something happens,” he told the Mighty. “I wanted to show them what their father saw.”

Cardoso said there’s more to come in the series, but he can only shoot the photos when his fiancee is present, for his own safety.

“When I do them I get into the world I normally spend every day trying to fight,” he said. “For these photos I have to let go.”

You can see the series below:

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“Emotions” photo: Yospie Cardoso
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“Closed up” photo: Yospie Cardoso
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“Paranoia” photo: Yospie Cardoso
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“The stigma of schizophrenia” photo: Yospie Cardoso
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“Suicidal thoughts” photo: Yospie Cardoso
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“Anger/Rage” photo: Yospie Cardoso
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“Anxiety” photo: Yospie Cardoso
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“Shame” photo: Yospie Cardoso
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“Talking to myself” photo: Yospie Cardoso
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“Lonliness and alienation” photo: Yospie Cardoso
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“Delusions” photo: Yospie Cardoso
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“Hallucinations” photo: Yospie Cardoso
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“Visions” photo: Yospie Cardoso

 

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3 Things That Help Me as an Adult Who Experiences Shutdowns

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After reading an article on what helps children with autism during shutdowns, I thought I’d write about my own experience as an adult who still has shutdowns.

First off, what is a shutdown? Here’s my definition: A shutdown occurs when someone is experiencing sensory overload and snaps into their own world and out of reality. When I shut down, it can occur for different lengths of time and with different severities.

I’m blessed my fiancé, Traci, understands my shutdowns, knows what to do and knows why they may be happening. This is so helpful as an adult on the autism spectrum. So let’s go into what helps me as I am shutting down.

1. If you know me well, you’ll see me start to get quiet and anxious. My body just kind of freezes, and my mind starts to take myself out of reality. When this happens, please ask me if I would like to go outside. This will take me out of that mindset for a moment and help me realize where I am. I need to get out, and without you, I can’t get myself out. During my student orientation at college this summer, everyone was talking too loudly, and I started to shut down. My fiancé asked if I would like to go outside, which helped.

2. If noise is an issue and I can’t excuse myself from the situation, my fiancé might help me hold my ears or take out my ear plugs, anything to help simmer the noise down. If I am overheating — I’m hypersensitive to temperature, too — she will get water for me or soak a towel to help me cool off.

3. If I have already shut down, just be there. Knowing you are there helps. If you can alert me without grabbing me, that’s even better. Allow me to relax during the sensory overload. Sometimes it may be a few minutes, and other times it might be an hour.

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Graphic designed by Catherine Contillo

Things to remember not to do:

1. Don’t touch me. Don’t try to rub my back. Don’t try to hold my hands. Just please don’t touch me. Being overloaded already heightens the touches and just makes it worse.

2. Don’t make me feel like a bother. Don’t make me feel alone. Just don’t.

My advice for adults on the autism spectrum who experience shutdowns? Get to know yourself. Find out what triggers your own shutdowns. For me it’s loud noises, so I don’t usually attend parties or go to Fourth of July events. And I always bring ear plugs with me because loud noises can happen anywhere unexpectedly.

I would also suggest talking to those close to you. My close friends understand me and my quirks to an extent. The number one thing my friends know is if I tap them on the shoulder, I need to get away from where we are. The nonverbal cues are the most important because as adults on the spectrum, we know being verbal during a shutdown can be quite hard. Make sure those close to you understand your main triggers. Maybe they’ll see what’s happening before it happens. Figure out what works for you because no matter what that is, it will help you in every situation.

Lead photo source: Thinkstock Images

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Why I’m Telling Something I’ve Never Told Before to Any Kid Living With OCD

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Dear friend,

I’m writing to you not from a place, but from a point in time — a zone, if you will — that I had no idea I could reach: a zone of calmness and peace. You see, I too had constant thoughts I didn’t and couldn’t understand; nasty thoughts that seemed to be transmitted into my brain by some heinous monster. I too felt the weight of anxiety on my chest squeezing the air out of my lungs. I too felt the fear of the illogical, yet terrifying obsessions that make us yearn for some type of control. I too carried that inconceivable weight upon my shoulders and I carried it alone for the longest time. I too have obsessive compulsive disorder.

Upfront I want to tell you this letter’s purpose is not to say it goes away with time —because it doesn’t. But what I will say is this: It can get better. You deserve better, but the only way to do it is by speaking up. You can’t do it alone.

I know your thoughts are frightening. I know they’re sometimes crippling. I know they’re not yours and you don’t want them, but they’re there and you have to deal with them. This is why I’m writing to you right now, friend. I want you to deal with them. I need you to take the first step; the first step I should have taken earlier in my life.

Let me take your first step with you, because no one should do it alone. You, my friend, will seek out help — whether you choose professional help, or simply letting someone in your family know the truth, that is your choice. But in joining you, I’m taking another first step in my life, which is something I’ve been putting off for 23 years: I will be completely open about my irrational fears and I will share them with you and any curious eye.

These are all things I’ve never told anyone out of fear or embarrassment:

  • As a kid, I would avoid knives out of fear of spontaneously stabbing someone.
  • I would skip in place at the mall to ward off intrusive thoughts, breathing in when I saw a woman, and breathing out when I saw a man. I would hold my breath in between.
  • I washed my hands whenever someone I didn’t like touched me out of fear that I would become more like them.
  • I washed my hands so often that as a consequence, the skin from my palms would shed like snakeskin.
  • Sometimes I would spend about 10 minutes staring at my car, walking away only to be pulled back to it repeatedly by the need to check if I let the lights on or if I left the doors unlocked. Some days I would check all of the lights and all of the doors four or five times each.
  • One time I spent four hours trying to cook a simple meal (Chicken and rice with beans on the side). I had to wash and disinfect everything multiple times between uses. I was scared I would get salmonella or give it to someone else. 
  • I feared someone would break into my house and hurt my mother, sister and father if I didn’t check if the door was locked seven times before going to bed.
  • Some nights I would have to get out of bed after being all snug and comfy and ready to sleep to go wash my hands in order to ward off intrusive thoughts.
  • Sometimes, when the anxiety would be too much, I would stare at myself in the bathroom mirror and pull my hair. 
  • I would avoid dogs and cats out of fear I would harm them in any way.
  • I would avoid children for the same reason.
  • I would do all of these things in secrecy and full of shame.

I’ve gotten over most, if not all of these irrational fears and compulsions. Even on bad days when I’m mentally exhausted or agonizingly anxious, I still find the strength to let those intrusive thoughts be what they are: thoughts. I have them, and then I let them go. But I couldn’t have gotten here without the help of psychologists, medicine and my beautiful family.

I’m done with hiding out of fear of humiliation. I’m done with the taboo around mental health. But most importantly, I’m done pretending I don’t have OCD out of fear of making those around me uncomfortable.

Let’s stop pretending together. Please take that first step. Don’t do it for me, do it for those you love. Most importantly, do it for yourself.

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