For some reason, today I've been rethinking what I've gone through over the last 2 years. From the moment that the developmental pediatrician told us that both Rachel and Simon were on the spectrum to me pushing for the votes for this blog to be recognized, what have I learned about myself? I was thinking about how much everything has both changed, and stayed the same. But I also started thinking about my own journey towards acceptance of my children's diagnosis. And realizing how much further I still have to go.

I found myself thinking of a conversation I had a year and a half ago with someone from Infants and Toddlers (Early Intervention). I remember calling her needing to talk (not sure about what anymore). We tried to coordinate a time, but that proved difficult not because of our schedules per se, but because of me and my family (H1N1 hit this house pretty hard, including Daniel developing a mild pneumonia). But we eventually did get together to talk. Again, I don't remember the original topic of the conversation, but I do remember moments. I remember after talking for a while, she asked me if I blamed myself for what happened to my children. I remember telling her "No, I know that I didn't do anything to cause them to be autistic." And I did know that. But I also remember thinking how could it NOT be my fault. I have 3 children, 2 of whom have autism. I love them (and always have) as much as their older brother. But did I ignore their needs in favor of their brother or my own exhaustion? What choices had I made that could have led to this outcome?

The other thing I remember from this conversation was something that I was immediately ashamed of, and still am embarrassed to admit it. Anyone who is faced with a situation that they are unhappy about seems to have this comment running through their head, but most of us are smart enough to not say it. I can't say that. I said it. I still can't believe it. "I didn't ask for this!". Whoever would ASK to have a child with a disability that could prevent them from living an independent life? Who would ASK for a parenting career full of additional worries about their children? Who would ASK for the challenge of raising one or more children on the spectrum? None of us ask for this. But we have it. It has happened. And the best we can do is live with it. I don't remember what she said when those horrible words left my mouth. I was either too mortified (with myself) to listen to the answer or have just blocked it out, again due to the fact that I was so mortified to have asked the question in the first place.

This conversation happened approximately 7 months after learning that Rachel and Simon were on the spectrum, and about 2 months after learning their official diagnosis. Since then, we've seen progress and regressions (in both of them). We've watched them develop language. We've seen them learn to begin playing with others. We've watched them take on the challenges that are presented to them, and have learned to introduce new ideas and experiences.

And I've embraced the idea of being an"Autism Mom". I'm not fully there. I still fight it. I still strive for them to fit in with their typical peers and force them to have experiences with them. I still want to see them succeed in school and in life without their differences defining them. But when I think of where I was on the day of that conversation and the day I asked that ridiculous question and where I am today, I have to admit, I'm pleased with the progress that I have made.

-Ilene (DRS_Are_Best)

Children with Special Needs Moderator

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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.