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Autism: From Inside the Mind of a Power Sibling Named Zack Gonzalez

Zack Managing Editor's Note: If you don't know Zack Gonzalez, you're in for a treat. I met him last month at the Generation Rescue offices in CA. We should all have a son or daughter like Zack. Trust me. KIM

By Zack Gonzalez

Inside the Mind of a Sibling (AND some advice for you Mom and Dad!)

A day never goes by without at least one person asking me the number one question, “Can I have you number?” Just kidding. I wish. That number one question is actually, “What’s it like being a sibling of a kid with autism?” My immediate instinct is to respond, “Buy my book. That’s why I wrote.” But not trying to be rude, I often respond, “It’s like having expectations that are never fulfilled, but at the same time, bringing in a surprise that, at first, may seem challenging, but in the end, if you follow the instructions correctly, will lead a much more fulfilling journey.”

Being an older sibling to three other brothers (at the time; two from my dad’s side and one from my mom’s), when my mom announced she was preggers, again, I thought I knew what I was in for. And at first, I was right. But the night I scared Ethan, expecting him to crack up, laughing, and in turn got an blank response, was the day I felt like a failure as a brother. I thought I lost my groove. Defeated, after more attempts at playing with my brother, I gave in. I gave up. I was Amanda Bynes; retiring before I was old enough to even say I had a full career.

Within the coming weeks, I overheard my family talking about Ethan having autism. Autism? What the hell is that? My grandpa Pete calls it ARTism. Not intentionally. That’s just how he pronounces it. I giggle. Corrected him once or twice, but now just let him be. Autism or artism, either way you pronounce it, it still sucks. Or does it? Sure, Ethan was getting all this new attention, but sitting out feeling sorry for myself? That was my big plan? Way to go, Zack! That’s really going to get your somewhere in life.

No one in my family sat me down and explained anything to me. Something that I thank them for. Though it’s not something I recommend for other relatives in other families. I hate being left out of the loop. And that’s why, by not having autism explained to me, it actually motivated me to Google autism and find out what it was. Or is, I should say, if I want to be grammatically correct.

After countless hours of researching, I still didn’t know what the hell I was reading. How is an eleven-year-old going to understand “immune deficiency” or “adjuvants in vaccines” or even the God forsaken word, “spectrum.” After pretending to know what I was talking about, I finally started to get a grasp on things after listening to my mom explain them to others in her advocacy. I then decided to become an advocate of my own and then moved on being a full-time activist. And now “activist” is just one of the many titles listed on my resume. Titles that autism brought into my life. That I am thankful for.

I know we often curse at how ruff our lives have been since autism was brought in it, but I try to focus on the good it’s brought. Like making me almost fearless. Notice I said almost. Ending up looking like Bruce Jenner in the future is still a fear of mine. So, I think I’ve rambled a lot more than I should have, and now I’m getting all Byron Katie on you; inspirational. That wasn’t my intent when I started this. Sorry.

Growing up with Ethan was a bit tough for me. My mom was busy working and making her new marriage work, and now she has a son with autism. Great. My dad lived forty-minutes away with his wife doing the same, minus the kid with autism. So where was I left? It felt like I was left alone. With everything going on in my mom’s world, it seemed like her focus was long gone from me. This is why I write this. Parents often forget that they have other kids. Those other kids are often left to assume the other responsibilities and chores. They have to give up watching Jersey Shore for a night because they’re too busy making sure their “Ethan” isn’t running around with a knife or writing on the walls or running out into the middle of the street, laughing, or setting the house on fire. Yep. Ethan’s done that too. I’ve been in tears of frustration with him. Broken and left crying after I’ve had just a little too much babysitting.

So what’s my advice? Parents, acknowledge your kids! ALL of them. Even if there are twenty of them. And if there ARE twenty, it’s called a freakin’ condom. Just saying. It comes in handy at times. I’m sure my father’s five kids is a daily reminder of that. (Love ya, Dad.)

Set a day out of the week, or month, that you can use as a day for you to spend with your NT kids. Show them some TLC. Set the day and KEEP IT! Please, keep it. My mom left a lot of false promises of Mom-and-Zack days that I didn’t see much of growing up. It killed me. Don’t do that. It’s bad karma.

Help them understand autism. Talk to them about it. Get them involved in the advocacy. It helps. It makes them feel “in the loop.” Bring them to your meetings. And don’t lie and say you don’t go to meetings or conferences. You do. A lot. I know. And it’s usually when you have a small break from you kids. This is bonding time you can use. USE IT! 

Here are some common questions I get:

- How do I get my kid to understand autism? Don’t buy them Holly Robinson Peete’s book. Just kidding. Kidding. Kidding. But, if you’re gonna buy them a book, don’t just hand it to them and say, “Here, Honey, read it.” YOU read it, and then have them read it, and then discuss it. So that you’re both clear. And if your kid comes up with an idea, don’t shoot them down. Embrace it. Even if it’s ridiculous. Okay, maybe not if it’s dangerous. But you get the point.

- How do I connect with my NT kids?

What do I look like Oprah? Okay, fine, I’ll play Oprah in this scenario. But if I’m playing Oprah, can I use her bank account as a prop? You can connect with your kids by, again, spending time with them and just them. You may think buying them things is helpful. It is. But it doesn’t replace letting them know you love them. So be sure to tell them that you love them. Many times. Even if they beg you not to. They, deep, deep down inside, like it.

- My kid wants no part in the advocacy. What do I do then?

Buy them a sports car. Alright, that might not do much, but it’d still be nice to get that on my birthday (wink, wink, Mom). If they seem uninterested, don’t force anything on them, it’ll push them away. But encourage the small times that they are interested. Because they will be. Trust me. They will, but they’re stubborn and will prove to you that you’re always wrong. But if you welcome them with open arms, they might just open up a little more.

Don’t ALWAYS make them babysit. They’re most likely going to agree, but try not to push it too much.

Keep them involved but don’t overload them. Remember, they’re just the siblings not the parents. So having them change diapers, babysit, rub your feet, cook dinner (not necessarily in that order), babysit, make you a margarita, and then clean the walls after they’ve been written all over, might not be the best thing to load them with in one day. 

I hope this was helpful. Shoot me more questions and maybe if I’m lucky enough, Kimberly will allow me to post a follow up blog of me answering your questions. Hey, I didn’t curse at all in this post, so that’s an accomplishment that deserves a follow up, right?

Oh, and you can buy my book Saving Deets!: A Family’s Journey with Autism, on sale now. And, yes, that IS shameless self-promotion.

Book Link: Saving Deets by Zack Gonzalez

OR http://www.zackgonzalez.com/Shop-Zack.html (in this link, I will SIGN YOUR BOOKS)

Thanks!

Zack Gonzalez lives in Southern California with his family.  Visit his website www.zackgonzalez.com to learn more about his incredible advocacy for his brother, his new book "Charity Bites " and his fundraising and comedy efforts.

 

Zack

www.ZackGonzalez.com

Comments

Diane

Zack - thanks for reminding us that autism impacts the entire family. I've had my NT son yell at my "I wish I had autism too" - that's a wake-up call that he needs attention too!

Loved the comment about ARTism - I've had more than one parent tell me that their kid is very "ARTistic" too! Somehow painting with poop is likely not that art they were referring to!

Kristi Wilson

see I read this wonderful article. It is awesome, just like you, Zack.
Love you most...MrsWilson

Veronica

Loved it Zack, after reading this it makes me understand why my daughter feels left out, i thought she was being a brat but with your insight realize she wants to be part of her brother's autism. There will be more daughter and mother time moving forward....hope to hear more from you!!!

melanie belocura

Well Zack you've done it again. You are AMAZING!!!! I feel truly blessed to know you. This article is AWESOME!!! I hope to read many, many, more. I know that you speak up for kids like my Raymond who hasn't yet found his voice. For that i am eternally grateful. Keep writing and inspiring us all.

XOXO
Melanie

elaine

Thanks for sharing! Very funny.

a mom

Thank you, Zack. Your entertainingly delivered insights and recommendations are dead-on and so absolutely necessary...and even potentially life-saving for kids like my oldest son/autism sibling who, after years of playing second fiddle to autism, eventually became suicidal. What a fantastic inspiration you are to parents as well as siblings.

I just have one question: where do you get your coffee? ;)

Madvocate

Zach - you rock!

What great practical advice you give. I think your book will be a hit.

Kelly Vanicek

Already love you Zack. Can't wait to read more.

kathleen

Zack, I'm off to buy your book! Thanks for putting your sibling perspective "out there". So easily the siblings left out...not forgotten, just unintentionally left out. I can't even count the number of times I've had to rearrange my 1 on 1 with my NT daughter due to her vaccine injured brother's behavior. A tug-of-war that I never knew would become our lives. Thanks you so much for writing your book. Your courage, I'm sure, will shine through as it does in the small excerpt here.
God bless,
Kathleen

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