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Why I Speak With Schools Around the World About Autism

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The transition to school can be a challenging time for anyone. When you add having a diagnosis of autism and/or other special needs, though, it may be overwhelming. This is the main reason I want to become a champion for the cause in our schools. This is where my story begins of wanting to speak in our schools.

When I was diagnosed with autism at 4, I was just starting pre-k. My parents had to transition to helping me find supports while I had to transition to going to school for the first time. Ever since that day, I knew I was special, although it wouldn’t be until I was 11 that I learned I had an autism spectrum disorder.

My early years were difficult to say the least. Between being overweight and dealing with sensory overload and extreme shyness, I never wanted to be around any of my peers. It didn’t take long until I was bullied for being different. Until I went out of district in the fifth grade, I was one of the only kids with autism in my classrooms.

I look back at that scared kid who didn’t really understand the world around him, and that’s why today I have a passion for spreading education about autism to our students. I grew up a victim of bullying and not understanding my diagnosis. After becoming a professional certified speaker a few years ago, I now have a resume that has given me the opportunities to
speak at school assemblies and paraprofessional events to make the entire school community aware about autism.

Each school has taught me something different that I’ve been able to put towards my talks and presentations. Through my presentations, and seeing a need for mentors, I became a mentor to high school students on the autism spectrum to prepare them for adulthood.

If any educator ever reads this, I hope you will understand that more and more kids will likely know someone with autism. When that happens, I hope we can answer some of their questions and help break down barriers of ignorance to help protect our kids.

I grew up feeling different, but now I know I’m different and not less. Hopefully we can make our students feel the same.

A version of this post originally appeared on Kerrymagro.com.

Lead photo source: Thinkstock Images

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What YouTube Means to Me as an Autistic Teenager

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Today, social media affects almost everyone on a daily basis. I think there are people in this world who think social media brings more harm than good, whether it’s cyber bullying, not having enough followers, you can’t seem to take the right picture or just don’t feel good enough compared to other people.

Yes, this can be the case for many people who join social media, but it’s a lot different for me as a 15-year-old with high-functioning autism.

I had known about YouTube for a long time, but when I saw my first YouTube video back in 2008, I never thought it would become one of my favorite things. When I was 11, I picked up a mascara for the first time, which started my spiral of makeup obsession.

Sophia Digirolamo

I wanted to learn more, so I turned to YouTube because I didn’t know anyone who could teach me. Once I turned to YouTube, I found this amazing community of men and woman who taught people how to apply makeup. I knew from then on I wanted to be a part of this group.

At the time, I was struggling with a new diagnosis that made me feel like my life was over. I was diagnosed with autism the year before, which my family and I didn’t know anything about. I was going to a school with a very weak special ed system, and my grades were plummeting. And the bullying was so extensive that I was contemplating suicide at only the age of 10.

Since I didn’t have any friends to hang out with, I spent most of my time on YouTube. I would spend hours a day playing with makeup and trying new looks from different tutorials. And I really started to get to know the people who were teaching me. I really felt like I knew these people, and they seemed like friends even though I had never talked to them. The fact that they made these videos just for complete strangers to learn from was so helpful to me and still is.

After about a year, I went to a new school where the kids actually accepted me. My grades went up, and I was happy, which was something I hadn’t felt in a long time.

Once I was in my new school, I decided I was ready to start posting my own videos. Looking back on those videos, I understand why no one watched them because they were pretty awful! But as time went on, I got a real camera and an editing system, which is when I really got serious about YouTube.

I also started to try out new styles of makeup. I did things that were more dramatic and even tried some SFX makeup, which was huge for me because I’ve never been able to watch horror movies. Anything gory didn’t agree with me. Everything I learned about makeup came from YouTube. Other than that, I’m completely self-taught.

Slowly, I started to grow a small following and became friends with other content creators across the country. I realized these are real people. They’re not perfect, they’re not robots, they’re people just like me who have gone through similar things and have similar hobbies.

Through YouTube, I have learned so many social cues and have grown so much socially. I used to be very shy, but now I can’t go a day without talking to more then one friend, whether on Skype or in real life.

And surprisingly, I don’t get many hate comments. I still have a small audience on YouTube, but they’re a nice group of people who support me. And I’ve met a lot of mothers of autistic children after I started a small support group for moms when I was 13. They’re really interested in my life as an autistic teenager, and I talk with them about what they can look forward to as their children get older.

Now I have friends all over the world due to the fact that I have put my work out there to teach other people the art of makeup. And this year, I entered a huge makeup competition called the NYX Face Awards. I didn’t make it to the top 30, but I made a video that challenged me more than anything, and I’m very proud of it. I’ll definitely enter again, and my work will be even better than before.

Being on YouTube has changed me in so many ways for the better. I would have never discovered my passion for makeup if I never went on YouTube. I would have never become friends with such beautiful people, and I would probably still be facing challenges.

If you take care of an autistic child, please do not limit them. Do not underestimate the power of a YouTube video because YouTube changed my life. I don’t know where I would be without it.

Follow Sophia Digirolamo on her YouTube channel.

If you or someone you know needs help, visit our suicide prevention resources page. 

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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To My Autistic Son's New Teacher, Before the First Day of School

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Dear teacher,

You are going to be my son’s teacher for this upcoming school year. He is an amazing little boy who has grown by leaps and bounds. He is funny, he loves to dance and he has a passion for music.

My son wants to be accepted by his peers. This can be a challenge at times, because my son does has difficulty with personal space. Children may think he is being mean when really he is just trying to get their attention. You see, my son is on the autism spectrum and also has ADHD. My son has difficulties with transition, self-regulation and impulsiveness. With all of this being said, you would be absolutely amazed if you saw where my son was a couple of years ago and where he is today.

The author's son in a classroom

Two years ago my son barely spoke. This caused him to have meltdowns because he had difficulty expressing himself. He also could not stay on task for longer than two minutes at a time. Today, my son’s speech is in the average range, and he can often stay engaged for the entirety of a school lesson. As his mother, it makes me want to cry to think about how far my son has come.

Please be aware that when my son enters your classroom on the first day of school, he works so hard on a daily basis to do his best. Do not let it shock you if he experiences a day where he struggles with transition, or if he invades one of his peer’s personal space. He will need you to be his champion during these times. He will need you to tell him everything is going to be OK. He needs to be aware that you will support him when he experiences a difficult moment. He does so much better when he feels supported rather than feeling as if he is being ridiculed.

My son’s personal best may look different than his peer’s personal best. It will be important for you to realize that my son may need some additional supports to be successful, but that it’s still important for him to be held to a high standard. That high standard may look a bit differently than one of his counterparts. This is dependent upon the type of tasks that are asked of him. If you seem him trying to avoid a task, this is most likely occurring because the activity you are asking him to complete is difficult. This doesn’t mean he can’t complete the activity, but it may mean that he didn’t quite understand your instructions, or he may need a visual, or he may just need some additional waiting time so he can process the assignment.

I am completely confident that you will do everything in your power to support my son. I know how hard it is to be a teacher. You see, I am also a teacher. I know you may have limited support and resources. I know you work long days and are often uncompensated for your time. My purpose in writing this letter is really for you to have a better glimpse of who my son is. I am hoping you will be his advocate and champion during this school year. I will do everything in my power to support you. I am looking forward to building a strong partnership with you this school year.

Best Regards,
A Loving Mom

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I Was Nervous to Take My Son With Autism to Sesame Place, but I Didn't Have to Be

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Oh, how close I came to rethinking the whole Sesame Place trip idea…

Fourth of July weekend…

The crowds…

The noise…

Elements that tend to create an intensely stressful environment for my son, Leo, and others on the autism spectrum.

Much like his mommy, Leo gravitated towards the long-running program from an early age. As an adult, I can appreciate “Sesame Street” for so much more than the entertainment it provided me as a child.

Decades of teachable moments; at its core, Sesame Street’s message is one of acceptance, inclusion, and love. Their recent autism initiative gave a platform to so many children with autism — to a community whose voices needed to be heard and whose stories needed to be told.

But the worry leading up to this trip consumed me…

Surely, it would all be too much.

I shutter at the thought of all the incredible moments that would have been lost had I given in to my own fears and anxiety.

Leo strolling through the streets of Sesame Place, happy, and confident as can be.

Witnessing the love my boy has for the Sesame Street characters we have watched on the screen for years fully expressed, as he gazed up at each one in wonderment.

pictures of little boy with autism at sesame place

I saw my baby morph into a ride warrior right before my eyes, braving a roller coaster that made my own heart leap out of chest; Leo, laughing with glee as we whipped through the sky.

This weekend, the boy who lives and breathes Sesame Street soaked up every second surrounded by the characters that help him to make sense of the world around him, and through his own perseverance, did not allow any of his challenges to detour him from experiencing each beautiful, magical moment.

I have always been fiercely protective of Leo. But I know that there are times when I need to allow him to spread his wings and fly.

Thank you, Sesame Place, for letting my boy fly.

Follow our journey on Life with Leo.

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What It’s Like to Be a Guitarist With Autism

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My name is Tom Bak and I am a musician and songwriter, and I have autism.

I was diagnosed with autism when I was 3 years old, and I have been playing guitar since I was 7. Music has always been a part of my life. My mom once said music was the only therapy I ever responded to.

I started performing in rock bands when I was 11 years old. I don’t try to hide my autism from my band, from the audience or from anyone. But having autism means I interpret, write and perform music in a unique way.

When it comes to performing sometimes I have to stand perfectly still to keep my concentration. If I move around while performing that can break my focus, and I’ll lose my place in the song. Standing still while I perform helps me maintain my concentration. The audience may think I am emotionless and stiff when I play, but this is just what I need to do to stay focused.

Sometimes when I’m performing it’s hard for me not to look at the audience.  Autism makes me sensitive to sensory input such as noise, people moving around and talking with each other. I try to just play through the noise and look at my bandmates to help keep me on track. But sometimes it’s really hard for me to redirect my attention away from the audience when I’m performing. One thing I can do that helps me avoid getting distracted by audience noise during a show is to focus on my guitar while I’m playing.

I started writing songs when I was 15. I’m lucky because my sister, Evee, and my best friend, Harrison, are a part of my band, and we work together to write new songs.

Tom Bak's band Bak Pak
Tom Bak with his band Bak Pak in Philadelphia

I’ll start a new song by putting together notes. I don’t really think about what the song is about. I just start by playing out notes and creating melodies. Before the song is complete, we have to take the melodies and lyrics and arrange them into the final song. Coming up with an arrangement for a song is hard for me. I’m good at thinking about the details but not the big picture of the song. I tend to think about details, such as how notes come together, rather than patterns when arranging melodies. However, songwriting is good for me because it helps me think about the meaning of the song rather than just the details.  his summer, my band and I recorded two new original songs.

Tom Bak performing at World Cafe Live in Philadelphia in 2016
Tom Bak performing at World Cafe Live in Philadelphia in 2016

I’m grateful for my band and the opportunities we have had to play in live venues throughout Philadelphia. I’m also grateful for the friendships I’ve made through music. Music has been an important part of my life, and I’ve learned so much from writing songs and playing live music with my friends.

I got started in music because there were people who were willing to give me a
chance. Any child with a disability who loves music should be given the same chances that I had.

The world needs more understanding of people in the autism community. People need to see that having autism doesn’t hold you back from pursuing your talents and following your dreams.

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Mom Creates Inclusive Birthday Party Venue, Pixie Dust, for Kids With Special Needs

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All Raquel Noriega wanted was to throw her daughter, Ava, a birthday party the 2-year-old would enjoy. What she didn’t realize was how challenging it would be to find a venue that could accommodate a child on the autism spectrum.

Most venues host multiple parties at once, have bright lights and music blasting and are generally overwhelming, especially for someone with sensory sensitivities.

“In my search, I did not come across venues that suited her needs,” Noriega told The Mighty. “Like every other mom, I wanted to be able to go do fun things with my child and have a birthday party for her.”

Noriega eventually found a venue in Bayshore, New York, – Pixie Dust – which allowed her to tailor the party to her daughter’s needs. But she decided to take things a step further — to help other parents throw parties their kids with special needs could enjoy, Noriega bought Pixie Dust and began overhauling it as a special-needs-friendly party location.

“Our parties are customizable to each child’s needs and likes,” Noriega told The Mighty. “Every detail is thought and talked about with the parent during the planning process to prevent any meltdowns.”

Pixie Dust also allows parents to customize the party’s menu to fit their child’s dietary needs. “Most party places just offer pizza as an option,” she said. “We can customize the food menu for those with sensitivities to texture.”

 

The venue caters to all ages and offers gender-neutral parties as well. Some party themes include “Pixies & Pirates,” “Buggy Birthday Buzz,” “Butterfly Garden” and “Barnyard Picnic.” It only hosts one party at a time to make each child’s experience as peaceful as possible.

Pixie Dust also offers periods of “sensory play,” where parents can take their kids for an hour of play designed for sensory sensitivities. “Sensory Play focuses on stimulating children’s senses of sight, sound, smell, touch, balance and movement,” Noriega said. “We use a variety of fun and messy ways to make that happen.”

Sensory play periods are managed by a Pixie Dust staffer who is also a special education teacher and development therapist. To better serve her clients, Noriega is working on becoming a certified autism specialist and is hoping to start a support group for special needs parents on Long Island.

“We are definitely not a cookie cutter party venue,” Noriega said of Pixie Dust. “[We] are a judgment-free zone. We get it.”

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