Halloween Blog #1: Under The Mask

Halloween Blog #1:Under The Mask

When you're growing up with autism there are a lot of things you don't understand. You don't really understand how to make friends, and by extension, you don't understand why you don't have any. School, in and of itself, can be hard- typically you're really good in one subject and then you're lost and everything else. You understand you're different, but you don't understand why people look at those differences and exclude you from group activities.

When you finally start to figure out that the only answer for why people are excluding you is because you are different, you try to act like everyone else. In other words, you pretend that you are a different person. Eventually, you lose who you are.

I have always loved making up stories. Not only because I'm really good at it, but when I was younger it gave me a second escape from who I am. I can pretend that the characters I invented were me. As an extension to that, I was obsessed with television, movies, video games, etc...because it was easy for me to insert myself into those stories, I didn't have to create the story myself.

I have always loved Halloween. It was the one day of the year that I could actually physically become one of the characters that I looked up to. That, and of course, the untamable sugar addiction that all children are born with. But as I got older while I still enjoyed it, it started to feel a little unfair. Halloween is the one night of the year where everyone was wearing a mask and pretending to be someone else. For them, it was a game, but for me, it was my life.

Now, these feelings didn't ruin Halloween for me, but they definitely changed the way I looked at it. A night that I used to embrace, now was excluding me too. So if you know someone with autism, don't exclude them. Try to get to know them better. Try to look under the mask and see who they really are!

Have Greattastic Halloween 

J. Mitchie Ulibarri

Thread Of Hope (Year 5)

Thread Of Hope (Year 5)
On October 15, 2009, my best friend Sam, or as I called her, S.M. passed away, after a lifelong battle with a rare blood disorder: Fanconi Anemia. The last ten years have sucked. Yes, a lot of amazing things have happened in my personal life- My brother's band came together, and brought Ryan and myself closer together, I graduated high school, I figured out what I want to do with my life (more on that next week), I started writing this blog, I sing in the choir at church, and most notably I turned some of my biggest childhood “enemies” into people who I consider my sisters. But all that joy can feel so incomplete because she should be standing with me through everything. I can't even begin to fathom however, how much worse it is for her family.

In the wake of S.M’s death her mom, Mrs. (Nikki) McCarthy, started the nonprofit organization called Sam's Fans that raises money for music and art therapy in Ohio hospitals. Now Nikki had made friends with a woman named Miranda because their kids went to the same school. Miranda owns a fashion boutique called “Thread” with two locations in the central Ohio area. As Sams fans was just beginning, Miranda decided to help. Thread hosted a fashion show called A Thread of Hope and all the proceeds would go to Sam's Fans. 

Last Thursday was 5th Thread of Hope. I started going to this event the second year they had it, and that year I knew most of the people there. The 3rd year I lied and told myself that I knew all the people there to make myself feel better about my social skills, and last year I admitted I didn't know everyone. This year there were so many people in attendance it made me glad I'm not claustrophobic.

Nikki has given me the title of “unofficial cameraman” because I'm always taking pictures/videos at events and making little slideshows. It even got to the point that when I graduated she and her husband Mr. (Dan) McCarthy bought me a GoPro. Right before the fashion show started, Nikki and Miranda got up on stage. They introduced a music therapist named Sara who had bone cancer as a child. I crawled to the front of the stage and started to video.

Sara talked about Sara talked about her experience with music in her life, how it helped her through, how it helped her through her battle with bone cancer, how she became a music therapist, the importance of music therapy (and a brief description of how it works) and how Sam's Fans helps her do her job. At the end of her speech, she said something that I think everyone who knows Nikki has thought at one point or another: “... I just want to take this time to honor Nikki. I consider her one of my heroes because she's lived through every mother's worst nightmare and has really taken that pain, and that opportunity to channel it into growth and healing for hundreds of other families.”

I can’t put that into better words, but I can thank Nikki. She hasn't brought healing just to those families who are going through something so terrible with their own children, she's brought it to everyone who ever met her daughter. I can't tell you how many times I've talked to her about a problem that I'm having as a result of losing S.M. and she doesn't say, “Hey I’m her mom, do you think I don’t deal with pain a thousand times over every day! GET OVER YOURSELF!” Instead, she just looks at me smiles and tells me that it's going to be okay. Thank you so much, Nikki, for all that you do!

I'm going to end this blog with an exciting announcement. Over the course of the five years that Thread of Hope has been an event, they have raised half a million dollars!!!! So yeah, I'm just going to leave that there…

Have a Greattastic day!

J. Mitchie Ulibarri

The Magical Pill

The Magical Pill

Because of my autism and my friendship with her (and because she’s a driven girl), my youngest “sister” Arlo is on the autism committee at her high school. The autism committee decided to do the annual Columbus autism walk that raises money for Autism Speaks. As soon as she knew about the event, Arlo invited me and August, my other “sister”, to join in the walk with her.

As I have mentioned before my dad runs an art studio so I told him that I needed some stickers and some t-shirts made to promote my blog. The day finally came and we started on the walk. The walk itself went really well. I gave away all my stickers, had fun with some of my friends, but most importantly there was this sense of community. 

When I got home I walked into the kitchen, where mom and dad were making lunch. We got to talking and Mom asked me if I knew what I was writing about in this blog. I said I didn't really know, and my mom told me this story: 

When I first got diagnosed with autism, we did the autism walk through HLC as a family. I knew that the walk was going to raise money for autism research...I just assumed research meant a cure for my autism. I told mom this and of course, she had to explain to me that that's not what autism research means.

I don't remember telling mom that, but I remembered thinking it and wanting it to be true. I've been starting to think about a question I've been asked thousands of times. “If somebody,”  people will ask, “made a magical pill that made your autism go away instantly, would you take it?”

The first time I was asked that question, I imagined it playing out in my head (as I do with most things). A doctor giving me a pill and saying that it will get rid of my autism. What would happen if I took it? I would probably be a lot quieter of a person, it would be easier for me to make friends, I might be able to understand certain situations I couldn't otherwise. I'd be absolutely positively normal. But that's just the problem, I'd be normal. If some doctor comes up with a pill that takes autism away, I will stay as far away as possible. 

The reason I bring this up is that I didn't always feel this way. I wanted to get rid of it. I know other kids want to get rid of it too. Maybe not get rid of it, but at least be normal. If you know a kid with autism tell them that someday being different won't matter so much. They will have people who love them, and they will feel loved. No matter what is going on now, life always gets better.

Have a Greattastic day!

J. Mitchie Ulibarri