Tag Archives: big sister

Trick or Treat

3 Nov

Another one of my traditions with Dyl is taking him trick-or-treating. Since he was very young I’ve been able to celebrate Halloween with him, more years than not. When he first started trick-or-treating we would prompt the entire process, and we were his voice. “Trick or treat… Thank you, Happy Halloween”. We would help him hold his bag out, and prompt him to repeat a simple “thank you” at each house, although he was inconsistent in responding. Then one year I was impressed when he independently said “Trick or Treat” at a few houses! And, one time he even greeted a neighbor with “Chuck E Cheese! Where a kid can be a kid!” We laughed and reminded him, “did you mean trick or treat?”

This year he recited an online social story over and over in between houses. He told himself, and us, “People give out candy, and small snacks!” …. “Wait here!” …. “Don’t go in people’s houses unless you know them.”

Then after I prompted him a few times, he kept repeating  “Look in their eyes and say ‘thank you’.”

I have thought about his perseveration and I’m still not exactly sure what to make of it. Does he repeat it as a way of reminding himself of what to do? Does he repeat things because he doesn’t know what else to talk about? Does he repeat it because he’s excited for the routine at each house? Does he repeat it because he thinks he’s supposed to say it over and over? Does he repeat it because it’s a favorite story he’s recently learned? I don’t quite know why he perseverates so much on social rules and exectations. But, regardless, he did a great job trick-or-treating, and I had fun going with him.

I also loved something else he said this year…. We went up to a dark house, knocked, waited, and then realized no one was home. He turned and said “That’s weird”.  !!!   He was spot on! Absolutely right! And it was hilarious! He knew that Halloween night was all about going house to house to get candy. So to come to a house where no one opened the door or gave out candy… that was weird! It was so appropriate, and totally spontaneous. It was a highlight of my night 🙂

Our Halloween’s through the years…

Halloween

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Radio Coverage

29 Aug

Yesterday something amazing happened. My blog was featured on a popular Los Angeles / Orange County radio station, The Fish 95.9.

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I couldn’t help but cry as I heard my post read over the air waves.

My little brother, my inspiration…he mattered to somebody. My story, my experience…it mattered to somebody.

Dylan’s life is touching so many others.

I’m so humbled, and so honored, that The Fish shared my story on their incredible platform. It’s a great feeling of validation and support. What an amazing gift. I am so thankful.

To hear the broadcast, click here.

12th Grade Journal

16 Aug

Last night I was digging through an old box of high school memorabilia and found my 12th grade English class journal. Each day we had prompts on the board, telling us what topic to write about. I’ll let my entry for “A Significant Event” speak for itself…

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I had no idea back then what the future held for him, and for our family. I was so excited thinking about the conversations he and I would have someday, not yet knowing that his words would be exponentially more valuable than I ever imagined, because they would come after such struggle. I was so excited to be close with him, despite the age gap…not yet knowing that he would inspire my entire career; that he would inspire me to write about him on a website read by people all over the world; that he would be the reason I help dozens of other families. I was so comforted back then, knowing our Lord already had a perfect plan for Dylan’s life, not yet knowing how much I would lean on that truth as a comfort for years to come. I was right back then… my little brother would grow up so loved and so cared for. More than he could ever know…

10 second phone call

25 Jul

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This week I had the best phone call I’ve had all year… And it was only 10 seconds long.

This is how it went:

Me: Hello?
Dylan: Hi, this is Dylan. How are you?
Me: Oh hi Dylan! I’m good, how are you?!
Dylan: I’m good. I just called to say hi.
Me: Oh okay. Im glad you called. I miss you. I hope you have a great day!
Dylan: Talk to you soon. Bye.
Me: Okay, I love you! Bye!

My sister is working with Dylan to teach him how to call people. Our conversation was entirely scripted. But! The goal is to prompt him through phone calls a few times, then fade the prompts and let him try it independently.

Some may wonder why this is important to me or why I think it’s so great, being that it was completely prompted. Well… For one, he willingly did it. Two, he’s learning the abstract concept that a person can be represented by a phone. He can talk to someone even though he can’t see them. Three, he is learning several important skills: how to dial numbers, the etiquette for greeting someone, asking questions, waiting for the response, and saying goodbyes.

The ability to make phone calls, which is so simple for most of us, does not come naturally to Dylan or other kids like him. It must be broken down and taught. And, it’s a skill that we can teach progressively to open up new doors for him.

Along with learning how to call family members we can teach him how to place food orders over the phone, how to make emergency calls, how to make phone plans with friends, how to set appointments, etc. The possibilities are endless!

I’m looking forward to my phone call from him next week. 🙂

Happy Birthday Dyl!

14 Apr

Dylan’s birthday party was this weekend. He gets really excited about his birthday every year. He loves parties and piñatas and cakes and candles. This year he chose to have a bowling party, and he got to celebrate with friends and family. But the best part (as it is every year), was singing to him during cake time.

You see, what my brother loves most about his birthday is the Happy Birthday Song. I mean, he LOVES it. He squeals with delight, smiles from ear to ear, and the joy he gets from people singing it to him is unparalleled and extremely contagious. His excitement is ridiculously adorable, and it’s the highlight of all his parties. Here are some pictures from PhotoStro.com, which captured his priceless expressions. I dare you not to smile…

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10 years ago

9 Apr

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 On this very day, 10 years ago, my littlest brother Dylan was born. I remember spending the day at the hospital with my siblings waiting for him to come. I was so excited when I finally got to hold him. I think I even skipped school the next day to be able to hang out at the hospital again. I was a Junior in high school at the time. And, I remember bringing his chocolate bar birth announcements to school with me and sharing with my friends.  I was so excited to have another baby brother!

My family and I had no idea the impact his little life would have on so many. But here we are, 10 years later, doing our part to share our experiences with those finding themselves on similar journeys. I know he will continue to inspire others, make them laugh, and maybe even change people’s perceptions. The effect he’s had on the world, unknowingly, in just one decade…incredible. I’m excited to see what the next 10 years bring us. But then again… can he just stay little, please?

Happy Birthday Little D!

Autism Awareness Month

4 Apr

I wrote this 2 years ago, in honor of World Autism Awareness Day, and ended up not sharing it…Until now.

“April 2, 2011- I thought long and hard about what to write for today. I came up with this… an honest look at what autism means to me.

Autism means heartache. It means fear. Fear of the unknown, fear of vaccines, fear of the future, fear of stagnation, fear of stigmatization, fear of failure, fear for safety, fear for when I’m gone. It means a family changed forever. It means loss. It means sadness, and anger, and hopelessness. It means worry, and panic and anxiety. Autism means pain beyond words. It means planning, and hoping and wondering and wishing. It means praying in tears for a cure, or even just for progress. It means a broken relationship. It means behaviors, and stims, and prompting, and teaching. It means uncertainty. It means waiting. It means denial, and repression. It means powerlessness, and inability. It means guilt. It means inadequacy, and unbearable hurt that I can’t take autism away. It means tough love, and pushing for more, and not giving up. It means the life I wish for my brother may never happen for him. It means the relationship I wish to have with my brother may never happen for me. Autism means making the best out of what you have. It means looking for the silver lining in everything. It means quirkiness. It means screaming and crying and tantrums and aggression. It means repetition and routine. It means triumph in every small victory. It means pride in every accomplishment, because they were so much harder to achieve. It means being aware. It means devastation. It means despair. It means frustration and hatred and boiling blood. Autism means sorrow and longing. It means different. It means embarrassment. It means never being satiated. It means advocacy and fighting and educating. It means a life-long battle. It means silliness. It means being perplexed and stuck. It means dichotomy. It means ambivalence. It means being misunderstood. Autism means caring, and compassion, and sympathy and empathy. It means a sweet smile. It means hugs and kisses worth more than a million bucks. It means redefining. Redefining success, redefining hope, redefining progress, redefining values, and strategies, and priorities. Autism means struggle. Struggle for the afflicted, struggle for their families. Autism means strength. Autism means weakness. Autism means faith. It means a new direction. It means helping. Autism means broken hearts. Autism means passion. It means finding joy and elation in every feat. It means never giving up. Autism means unconditional love.”

It was interesting for me to go back and read where I was at in 2011. I remembered writing about the gut-wrenching pain of autism, and just how many emotions a person can have about it. I didn’t remember my piece being quite so… What’s the right word?….depressing?? I can see that I’m in a different place, emotionally, now than I was back then. Not that the deep pain of autism has disappeared! No, I don’t suspect that it ever will. But I have seen so much progress in my brother that it’s allowed even more hope and excitement and pride to come in. (Those have been there all along, by the way.) All of the hardship and turmoil remains. I don’t think I’ll ever NOT be sad that I can’t have the type of relationship with my brother that I would like to have. But, I am just so overwhelmed with happiness and gratefulness for the relationship I do have with him. And I don’t think I’ll ever NOT be heartbroken that he may not have the life I wish he could have. But I’m determined (like the rest of my family) to make sure he has the best life he can.

He makes me smile unendingly. He makes me laugh, and beam, and he motivates me to do what I do. Autism is a beast. But it will never take away how remarkable my little brother is. And, let me just say, he’s pretty darn remarkable!

AngDyl

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