‘Real Housewives of New Jersey’ Mom Responds to Vile Comment About Autism

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To the person who suggested people with autism are a waste:

When your appalling and uneducated comment appeared on the Facebook wall of the Autism Behavioral Services page, I couldn’t believe that a human being could have such a lack of compassion and empathy for others by having the audacity to say something so vile — and so publicly — about the life of another. I thought to myself, ”What a hateful, hurtful and ignorant thing to say!” For a moment, I found your comment extremely offensive, and I felt anger towards you.

For a moment, I allowed your words to upset me, but I quickly chose to take that power away from you. Instead, I began to feel sadness for you. I have no idea what challenges in life you’ve had to endure or what kind of mental programming you’ve grown up with for you to think the way you do. I don’t know what caused the anger and bitterness that compelled you to lash out to hurt others the way you did. I just know that hurt people… hurt people.

I began to think that maybe I could help you in some way. Maybe if I educated you, just a little, I could open your mind to a new way of thinking and possibly open your heart to allow in a little more compassion. I believe it’s worth an effort.

As a proud mother of a beautiful, intelligent, loving child with autism, I want to provide you with an answer to your seemingly seething question that you so boldly and publicly asked:

“Why do people give birth to autistic kids? Waste of societies resources.”

Well, let me educate you.

1. There’s no medical detection or prenatal test to predict that your child will be born with autism. Even if I had known of my son’s autism prior to his birth, I would have still chosen to give him Life.

2. Autism signs and symptoms are usually discovered within the first few years of life. (The life you believe should never exist.)

I’m a mother who waited six and a half years and went through five miscarriages to finally give birth to, who I consider, my miracle child. I couldn’t wait to hold him in my arms, look into his eyes and love him forever. The love for my child is immeasurable, and I will continue to love him unconditionally regardless of any challenges he may have. He’s a joy to our entire family and has taught us more in life than we ever imagined we would be teaching him. Thank God he exists. He’s worth every resource we can get that will help bring out the best individual he can be. He’s worth every skill we can teach him that may make his life a little easier in the future.

3. In case you’ve never done the research, autism is a bio-neurological developmental disability that affects the brain’s normal development of social and communication skills. People with autism can also exhibit some self-stimulatory and repetitive behaviors. These individuals process and handle information in their brain differently than other people — differently, not less than other people.

4. Autism is the fastest growing developmental disorder, affecting approximately 1 in 68 children in the U.S. It’s also underfunded. (So we need more of those limited resources you say are a waste.)

What makes you feel that you’re more entitled to life and the use of our society’s resources than someone with autism? (Different, not less!) What makes you feel superior? I’m curious… what useful and positive lessons do you feel you’re teaching the world from the resources you’ve already received?

5. Although there’s no known cure for autism, with the right early detection, intervention and treatment services, the challenges autism can present can be lessened.

I believe every life is worth fighting for and improving on… even yours.

6. Every child — with or without autism/some other challenge — matters. Every human being has something to contribute to this world if people would pay attention to the lessons to be learned from each individual.

7. Many well-known people who have been “suspected to have” or diagnosed on the autism spectrum have successfully contributed to this society. Imagine if none of them had been born.

I hope you take some time to understand how your insensitive words may have affected families, such as my own, who choose to see the beauty of children with autism. We love our kids unconditionally and endlessly. As parents, we will continue to fight hard to give our children whatever we can to give them the skills they need to help make their lives easier. We’re parents who will continue to believe that these bright souls not only have the power to continue to learn but also have plenty to teach the world. Raising a child on the autism spectrum is a joy and challenge every single day, and we appreciate any information, resources and support we can get from others. I hope in the future, you choose empathy over your lack of compassion.

Jacqueline Laurita

jaqueline-laurita

This letter was published with permission from The Real Mr. Housewife, where a longer version of it appeared exclusively, with an introduction from Editor Matt Richards.

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The Moment My ‘Limiting’ Wheelchair Became My Favorite Toy

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When I was about 15 years old, I spent my days on YouTube watching videos of the professional skateboarder Ryan Sheckler and skateboarding tutorials. I knew my dream of becoming a skateboarder would never come true — I have cerebral palsy. I can barely walk on crutches, but I’d always wanted to skate. I dragged myself around every day with the help of my crutches or a walker. Then I closed my eyes and imagined my life without a disability and with a board under my feet.

When I was 15, I got my first wheelchair. I can’t walk for long distances, so before I got a wheelchair I was pushed around in a baby buggy whenever we had a long ways to walk. I didn’t like the fact that I couldn’t decide where I wanted to go, but walking was so exhausting that I really needed to sit down every once in a while. One day, my physical therapist asked me if I would like to get a wheelchair to replace the baby buggy, since I wasn’t a baby anymore. I agreed, so she told my family about it. It was not easy for them — they saw the wheelchair as something “very disabled” people use, and they didn’t see me that way. That is why I didn’t use the chair much in the first year. Walking, though tiring, was still less limiting.

Around the time I got my wheelchair, I was trying to learn German. One day, I was watching a German movie online and I noticed one of the main characters was in a wheelchair. I always read the names of the actors after watching a movie, and one name caught my eye: Aaron Fotheringham, wheelchair stuntman. I wondered what a wheelchair stuntman could do, so I Googled his name. The first results were YouTube videos, and the titles were things like “Wheelchair in a skateboard park.” Needless to say, I immediately pressed play.

That was the moment that changed the way I see my disability. I couldn’t take my eyes off this kid shredding the park on his chair with a motocross helmet on his head. At the end of the video, I was so happy I almost cried. It was possible; I could be a skater. Wheelchairs can be cool.

In that moment, I knew I needed to talk to that guy. I found a contact form on his website and sent him an email. I told him how his videos had opened the door to a whole new world for me, a world where dreams do come true. He replied the next day, and seeing his name in my inbox made me the happiest girl on the planet. There was someone telling me it was OK to have a disability. He was telling me there was nothing wrong with me and that the wheelchair was something to play with; it was not a bad thing. I found out he was not the only one hitting the skatepark on his chair. There was a whole team, a big family. I started dreaming about becoming a member of that family.

A few weeks later, Aaron told me he would be coming to Italy, where I live, for a TV show. They were filming in Rome, a six-hour drive from my town. Not close but not as far as his hometown — Las Vegas. I begged my parents to take me there. I knew I had to meet that kid. Eventually, they agreed to drive me to Rome.

When I met him, I was blown away by what he could do on his chair. Even my parents were impressed. We talked, played and had fun together. When I left Rome, I knew everything was going to be OK. My dreams could come true, and I could become the person I always wanted to be. That was only the beginning: I could also be independent and happy. My wheelchair became my favorite thing to play with. My disability was a blessing.

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 This post originally appeared on Ila’s Crazy Thoughts.

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When a Girl with Down Syndrome Needed Help, My Daughter’s Response Took My Breath Away

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It took having a second child for me to understand that disability did not mean inability. I am guilty, like many others, of seeing the chair before the person in it. I would look at those with a disability and not see the person first.

After my second daughter was born, my definition of disability was reborn. This wasn’t a child to be pitied or thought to be unable. This child could accomplish anything she set her mind to, whether it was walking or climbing up the wrong side of the stairs. She would defy doctors and our own expectations too often for us to begin putting limits on her ability. I wanted everyone to see Bridget, not the things that set her apart from her peers.

However, having a child with a disability wasn’t how I learned to “see” the person first. It was having a child without a disability.

When Bridget was in the NICU, Abby saw first-hand how this long awaited baby sister would change our lives. Abby has spent countless hours in waiting rooms doing her homework while her sister is doing her therapy. She has always known her sister had “special needs” but characterized it as just another quirk, like Bridget’s red hair. One would think this inequity would lead to either jealousy or disdain. But the opposite is true.

The long hours she has spent caring for her sister has created an empathetic soul. One who slows down to her sister’s pace not because she has to, but because she wanted to walk with her sister. Abby will unthinkingly adapt a playground activity so a friend who cannot run as fast as the others will be able to participate with her classmates at recess.

Early on, Abby created her own narrative about her sister. She would tell classmates (and teachers) that Bridget had a “funny” pattern in her brain or that it just took Bridget longer to do things. When asked about including her sister in events, Abby’s first response is: “Of course, she is my sister!” Abby redefined special needs to be anything that makes life harder for her sister and others. It was through watching Abby nurture her sister that I began to see a pattern forming.

Abby treats all children as if they are able. Abby may question why a person is using a cane or a child may act in a disruptive manner, which is only natural. She will inquire in a way so as not to embarrass herself or the person who has prompted the question. What is not natural is her unwavering ability to see the person first, disability second.

Recently Abby was at a 4H visual presentation. A child with Down syndrome got up to present and encountered difficulty managing her posters. The 4H presentation must be conducted solo, without parental assistance. The judges showed kindness and asked the child if they required assistance. Eyes full of nerves, the child said yes, please. The judges had barely finished giving permission when Abby was out of her seat asking the girl what she needed.

She did not tell the girl how she was going to help; she asked the girl how she could be of help. Abby asked the girl where she wanted her to stand. She asked the girl what sequence the girl wanted to posters in. And after the presentation was finished, she asked the girl if she was okay with how Abby helped her instead of letting the girl’s friends assist her. (Thankfully, the answer was yes.)

But I learned something much more important. Too often I see someone with a disability and move quickly to assist. I now follow the steps Abby displayed naturally:

1. Ask if they need/want help.

2. Ask how we can help.

On the drive home, I told Abby how proud I was that she stepped up to help. She replied, “Of course, Mom” (with an exaggerated sigh). Then she asked if the girl had special needs, like Bridget. When I replied yes, Abby said she thought so, but she wasn’t sure until she sat back down. She took my breath away when she added, “She just looked as nervous as I felt.”

When Abby looked at the girl on stage she didn’t see a girl with Down syndrome. She saw a girl on stage that was nervous and thought she might have special needs. It wouldn’t have mattered if the girl did or did not, Abby would have reacted the same way.

The way we all should: see the person first and offer assistance.

This post originally appeared on Undiagnosed But Okay.

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A Letter to the Word No One Likes to Hear From Doctors

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Dear “Interesting,”

Yes, Interesting, you’re not the word people like to hear from their doctors. You fit in with “Rare,” “Hmmm,” “Exceptional” and “Will have to look into.”

So why, Interesting, must you be with me? I have a diagnosis of leber’s hereditary optic neuropathy (LHON)? That itself is Interesting, but I also didn’t follow the way it typically develops. Of course. So Interesting within Interesting. I lost my vision in my left eye when I was 20. Typically, the other eye is affected and loses central vision, but I’ve remain stable for more 10 years, which is Rare.

When I went back to the neurologist for other problems, he stated, “I already diagnosed you.” Within a week I heard, “It’s Unlikely that you have LHON and multiple sclerosis (MS)” and then, “Yes, you definitely have both.” Interesting.

It’s Unfathomable that my first son was stillborn after a normal pregnancy. It’s Unfortunate that it took me awhile to get pregnant both times.

It was Unforeseen that I had a MS relapse after my son, Reece, was born. My vision deteriorated, and I became legally blind months later.

Yes, Coincidentally, there’s some kind of connection among all my medical ailments, but my condition is too Rare for any answers.

Now, Reece has been diagnosed with autism, which is Ironic because LHON been connected to sensory issues. It’s all too Complicated.

I may not visually see everything, but above all, I know Reece and I aren’t just Interesting. We’re Special.

Sometimes I wish you would try out Normal, Interesting. (Or simply, Easier.) I would love to meet Cure.

Sincerely,

Marci Belk

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Paramedic Rescues Pediatrician Who Helped Save His Life 30 Years Earlier

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Chris Trokey made a special rescue on March 29, 2011. The paramedic based in Orange County, California, was among those who responded to a car crash where Dr. Michael Shannon was badly injured and stuck inside a burning SUV along the Pacific Coast Highway, KTLA 5 News reported.

After the rescue, when Shannon was recovering in the hospital, Trokey realized how the two were connected — Shannon was the pediatrician who helped save Trokey’s life 30 years ago when he was born prematurely.

Born weighing just 3.2 pounds, Trokey was given a 50 percent chance of survival. But Dr. Shannon stayed with him around the clock to help the infant survive.

It’s amazing to watch them all grow up, but to have one come back in your life on a day you really need it, that’s really incredible,” Shannon told KTLA 5 News.

The two were recently reunited again at a local cancer fundraiser.

Watch the video below for the full story:

h/t Reddit Uplifting News

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When I Heard Them Make Fun of Our Schoolmates With Special Needs

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Drool in my hair, leftovers from lunch on my shirt, and a full heart. Big hugs from my not-so-little brother are my absolute favourite. He is the only person I know who loves without limits, and never holds back. His life the past 21 years has been a rollercoaster filled with ups and downs, but one thing about Nigel remains the same: he is simple and he is pure.

Nigel was born June 3, 1993, a day that changed our family forever. Nigel has a very rare condition called “linear nevus sebeaceous syndrome.” I bet that 98 percent of the population has never even heard this term before, so I’ll explain Nigel the best way I know how.

He functions at about the age of 2. He is nonverbal and needs 24/7 care, including feeding and diaper changes. He also suffers from severe epilepsy, and after one brain surgery, countless medication combinations, and a vagus nerve stimulator implant, I am sad to report he still seizures on a daily basis.

Growing up with Nigel has been a journey, and our relationship has changed throughout the years.

As a little girl, I really didn’t see what made him different. I just assumed everyone had a team of nurses, therapists and doctors when they were little… it takes a village doesn’t it?  I got to spend lots of time with my granny and my aunt when Mom and Dad had to travel to appointments, but I never understood the seriousness of it all; I just thought everyone wanted to hang out me.

When Nigel started at my school I remember being so excited. My little, adorable, brother was at MY school. I got hugs in the hallways and hugs at recess. He was my little security blanket that I knew I could go to when I needed some familiarity.

Not to mention, everyone else thought that Nigel was pretty cool. I can remember other kids playing with him on the school yard and singing songs to make him laugh. Most of the time this made me smile, although I will admit I would often remind the other kids that he was MY brother, so you know… back off a bit.

Our relationship got foggy when I entered into my teens. Things are so awkward during those years. I was rake thin, with braces and not-so nice skin. All I wanted to do was to fit in, and having a brother that was “different” didn’t help in that area. I hate to admit it, but I was embarrassed of my situation at home and I was scared of what other people would think. This went on for about four years.

I would only invite certain friends over who knew about my “situation” and I rarely talked about Nigel with anyone but family. I went on to high school as did Nigel two years later. My parents made the decision to send him to a different high school for two different reasons. One was that the other school was smaller with a better Special Ed program, and the other was to give me my own space. I will always be grateful that they let me have my high school years on my own. As much as I love Nigel, I needed that space to grow.

I can remember so clearly when everything changed. There were two separate events that completely dispelled all of that embarrassment stuff that haunted me during those puberty-infested years. I was probably about 16 when the first one occurred. I was in high school at the time in a family studies class. We were assigned a project where we were to address different issues that families faced. For some reason, I decided to do the project on my own family.

I don’t know why, but I was determined to break the silence I had kept for so long. I can remember doing the presentation (and holding back tears while I did it), and at the end having people come up to me and say that all this time they had thought I was an only child. People were kind of shocked, but no one treated me any different. Progress.

The second incident was not long after the ice-breaker moment. I was sitting with friends in the auditorium waiting for an assembly to start. A few students with special needs entered the gym with their EAs when I heard two students down from me say, “Here comes the retard parade.” I could literally feel my blood boiling and my hands shaking. I don’t think I had ever been that mad before.

Without hesitation I leaned right over and gave that girl a piece of my mind. It was like the words were just spilling out of my mouth. I ran up one side of her and down the other. I really can’t remember everything I said, but I do know that something along the lines of “If you said that about my brother I would kick your a**” came out. She replied with “Oh sorry, I didn’t know.” From that day forward… everyone knew. How could I be embarrassed of someone so cool and so gosh darn cute? It was like I did a complete 180.

Today I can describe my relationship with my brother as “unbreakable.” We have this bond that I don’t think anyone will ever understand. I love him more than anything in the world, and I would do anything for him. We spend lots of time together, laughing and singing and of course hugging.

I talk about him all the time. I share stories about him, I beam with pride when he does something totally amazing and fantastic like taking off his own shoe, and I am definitely not embarrassed. Although I do feel bad about my years of silence, I think that it was normal. I was pretty much embarrassed of everything back then (ask my mom!).

Today I am a very proud sister, blessed with a very special brother (struggles and all). He has made me strong, he has taught me what true love looks like, and he has reminded me every day that life does not have to be perfect be wonderful.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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