Guest Blogger: Ilene of My Family’s Experience with Autism

Autism. 6 letters. An “A” word. Doesn’t sound so complicated. It’s simple, right? Not when it stares you in the face, every day. Yes, I’m an “Autism Mom”. I’m also a “Twin Mom”. My girl/boy twins are both autistic. And we have our “normal” daily lives. But that is probably considerably different than what most people would EVER consider “normal”.

The funny thing is my 4 year old twins don’t LOOK autistic the way the general public seems to perceive autism. They’re not like the Dustin Hoffman character in “Rainman”. And they’re not like Max in “Parenthood” (although that is a quite realistic portrayal of an Aspergers individual). They act like my children. They have that twin magic that all parents of multiples get to see watching them grow. But they’re different. And anyone who spends any time with them, recognizes this fact.

We have to think through every little detail of our day. Even the slightest change can throw off a routine in such a way that we may not be able to recover from without a series of tantrums. Our best example is when I take boy twin with me to pick up his older brother and his friend from kindergarten. Every day, as soon as he gets off the bus from his full day of special needs preschool, we get into the car and drive down the street. He doesn’t want this. So out come the gummy bears. I make sure I have a green one in my hand. He’s crying, but he climbs in the car. Then he sits on the floor. I tell him to choose a seat. He refuses. I show him the gummy bear. Then he starts cataloguing the seats. “Ball Seat”, “Cow Seat”, “Brown Seat”. Then he sits on the floor again. I tell him to choose, once again showing him the gummy bear and taking a quick glance at the clock. He starts to tease, standing by a seat and calling out it’s name and showing signs that he’s about to climb in. But as soon as my hand reaches in to give him that final boost, he goes to the far door and smiles. Another glance at the clock. Eventually, I count down from 5 and forcibly put him in a seat. No matter which one I choose, he will call out for a different one. But he gets strapped in, I give him the green gummy bear and we head down the street. We always park in the same place (which is why I have to watch that clock). And we wait. We usually sit in the car for about 10 minutes listening to music (Laurie Berkner Band and Wiggles are among the favorites) and play some games until it’s time. Then I tell him “Last Song!” and turn off the player and the car and walk around to open his car door. I open the door with another gummy in my hand and he happily climbs out of the car. When he’s on the sidewalk, he gets the next gummy bear. Then we walk to the corner to cross the street to enter the school grounds. We wait for the street to be clear and then cross. He MUST walk on the left-side line of the crosswalk and he treats it like a balance beam. We finish crossing the street safely, another gummy bear. Then we walk to the school. He has to walk on the grass rather than the sidewalk. We get to the next crosswalk, he has to step on the pile of leaves or grass debris just off the sidewalk. Then we cross again, but this time a distance from the crosswalk. Another gummy bear. We come to Bus #152. He has to climb on. He stands at the top of the stairs and smiles at me. Then comes down. Then we walk into the kindergarten playground. We walk to Room #18. He announces, “18!”. Then when I repeat, he says “16!”. So we walk to Room 16. He leans against the door and announces “17!”. So we head over to Room 17. That’s big brother’s classroom, so we look inside to see if he’s there. Then he announces “18!” and we head back to Room 18. We repeat this cycle (with periodic gummy bears when requested) until the kindergarten classes are dismissed. Then a new routine begins.

Why did I just describe that in such detail? Because THAT’S THE ROUTINE! There can be no variation. If there is, his world comes to an abrupt halt and he doesn’t know what to do. He can’t function. I have to jump through hoops in order to get him to understand that it’s OK and that we can keep going. Our daily lives are full of such details. Predictability is what they need and expect. And that’s what they get. We do very little around here that isn’t pre-planned. Spontaneity left my life just over 2 years ago when we learned they were both “on the spectrum”. Our lives became a series of non-variable routines and activities. And you know what? We like it that way!

~Ilene

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6 comments

  1. It's "funny" how different kids on the spectrum can be.
    My 4 year old son doesn't care if we're on a schedule, but he is also clearly no were near as high functioning as your son (as I could never even attempt to do half of what you just described. He just wouldn't understand it.)

    ps I find it odd that so many people that gave birth to twins in the same year (mine were in 2006) have one or both twins on the spectrum. I wonder if anyone is looking into that….

  2. DRS Are The Best

    We're actually January 2007, but close to 2006. There's a new theory that added ultrasounds during pregnancy may be a risk factor, which makes multiples a higher risk group. But since heard that, I haven't heard any followup so I don't know if it's been disproven or if it's still under investigation.

    Noone seems to know much, which as a parent is EXTREMELY frustrating. I'm just happy that we are starting to get our stories out.

  3. Rebecca @ Unexplained X2

    Sounds like you're doing a great job at handling what you need to handle on a daily basis. You know your kids…you know what they need…you know how to give it to them. I'm sure there are days when you want to rip your hair out, but you're being a great Mom to your kids…hats off.

  4. The Adventures of Grunty and Chubbs

    Absolutely. I bow down to you, Ilene. You rock! Thanks for sharing your story!

  5. DRS Are The Best

    Thanks to everyone who read and commented on this story. When you are raising a child with a disability (or more than one), it's amazing how many things you have to consider. How many things others take for granted that you have to think about. But it also has it's rewards. I have been given the chance to really appreciate what we all accomplish on a daily basis. I have watched each of my twins both struggle and thrive doing things that others just "do" and never really think about. And, despite the routine-driven life that I lead, my life still changes and grows….every day.

  6. Details, details, details! What you have learned about your son and his need for routine and order shows how much you're paying attention to his world and how he sees it. I am a teacher for kids with Autism and I agree – there's not a "look" for Autism. Many of my kids look totally 'normal' at moments throughout the day – that is until their OCD, self talk, lack of communication or social skills or their anxiety surfaces. I think b/c kids with Autism "look" normal much of the time, its harder for others to understand and accept their uniqueness.

    I'm blogging all month for Autism Awareness. I Hope you'll stop by!
    http://www.barbaramanatee.blogspot.com

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