Friday, 13 May 2011

• 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. 

   

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