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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Autism Enters the Conversation at the Second Republican Presidential Debate

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Autism entered the conversation at the second Republican presidential debate on Wednesday, September 16, at the Ronald Reagan Library in Simi Valley, California.

After about two and a half hours of debate, moderator Jake Tapper asked presidential candidate Dr. Ben Carson, a pediatric neurosurgeon, whether or not fellow presidential candidate Donald Trump should stop publicly claiming that childhood vaccines are linked to autism, according to a New York Times transcript of the debate.

Dr. Carson responded by saying that numerous studies have failed to demonstrate any correlation between vaccinations and autism, then attempted to move the conversation in the direction of big government.

When Tapper again prompted, “Should he (Trump) stop saying it? Should he stop saying that vaccines cause autism?” Carson responded with, “I’ve just explained it to him. He can read about it if he wants to. I think he’s an intelligent man and will make the correct decision after getting the real facts.”

See the interaction in the video below:

Trump responded with the following:

Autism has become an epidemic. Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control. I am totally in favor of vaccines. But I want smaller doses over a longer period of time. Because you take a baby in — and I’ve seen it — and I’ve seen it, and I had my children taken care of over a long period of time, over a two or three year period of time. Same exact amount, but you take this little beautiful baby, and you pump — I mean, it looks just like it’s meant for a horse, not for a child, and we’ve had so many instances, people that work for me.

Just the other day, two years old, two and a half years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic.

I only say it’s not — I’m in favor of vaccines, do them over a longer period of time, same amount. But just in — in little sections. I think — and I think you’re going to have — I think you’re going to see a big impact on autism.

Dr. Carson responded by saying, “The fact of the matter is that we have extremely well documented proof that there is no autism associated with vaccination, but it is true that we are probably giving way too many in too short of a time and a lot of pediatricians now recognize that and I think are cutting down on the number and the proximity in which those are done.”

After the debate, Autism Speaks released the following statement:

The issue of autism took center stage during last night’s Republican presidential debate, and it must remain at the forefront of the national dialogue. There are millions of Americans affected by autism, many of whom are in need of better treatments, supports and services, and deserve more research on the cause of autism. Our elected officials must take action on behalf of them. We need a national plan that addresses the needs of people affected by autism across the entire lifespan.

As for the issue of vaccines, over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism.

Go here for a full transcript of the debate. 

What’s your take on this discussion of autism? Let us know in the comments below.

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Police Officers Escort Daughter of Fallen Cop to Father-Daughter Dance

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Jewel Warren, 8, lost her father, Memphis, Tennessee, police officer Tim Warren, when he was shot and killed in the line of duty in 2011, according to a post on the Memphis Police Department Facebook page.

When Jewel recently received an invitation to attend a father-daughter dance at her school, she was saddened by the letter. Her mother, Taylor Amen, spoke with Donna Kirk, founder of Our Fallen Heroes Foundation, and they began reaching out to officers from Warren’s department looking for an escort.

Many officers jumped at the opportunity. Because of space was limitations, six were chosen to escort Jewel to her dance, Yahoo Parenting reported. There’s already a wait list for which officers get to take her to the next dance.

 

On Friday, September 4, the community came together to make it a night Jewel will never forget — local florists donated boutonnieres, a corsage and roses for the officers to give Jewel, a photographer donated her time to capture the special night and Jewel arrived in style to the dance by taking a ride in a classic 1972 Cutlass Supreme, according to a post on the Memphis Police Department Facebook page.

 

We know we cannot replace Tim, but we can be there for his family when we are needed,” Said officer Amen, according to the Facebook post. “It was truly a honor.”

 

h/t Reddit Uplifting

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