9/3/08 - Heartbreaking

When you hear about people having twins, you probably think of how you've heard of the incredible bond that twins have, they can feel each others pain, they know if the other one needs them even if they are miles away, etc. We had these same dreams for our boys. From the moment we found out we were having 2 boys. We thought, they'll have life long playmates, they'll always have someone who will be there for the other even after Steve and I are long gone. Obviously we didn't anticipate or plan for Tyler to have autism, but you just roll with the punches right? We just need to show the boys how to play together. It won't come naturally but we'll pull together as a family and help them develop the best relationship possible. However, I wasn't prepared for Ben to so early make comments about Tyler being different.

During bath time on Monday, Tyler was a bit over excited and was trying to play with Ben. Tyler had his jaw clenched a bit and Ben got scared. I was trying to get Tyler to give Ben a "gentle" hug and that way I could make sure Tyler didn't get too excited and hurt Ben but Ben didn't want to have any part of it and just wanted out of the tub. I laid Ben down on his towel and he said, "Tyler's crazy"... My heart broke for Ben who deserves to have that twin relationship that everyone imagines twins to be. My heart broke for Tyler cause it marked the beginning of a life of stares, whispers, mean comments, and even bullying. I mean if his brother thinks he's crazy, imagine what other kids who don't love Tyler will think or do, as I've put in previous blogs, even teachers and school officials can be downright abusive.

So how did I respond to Ben? With tears rolling down my face I said, "oh honey, Tyler's not crazy, Tyler has autism. He may be a little weird sometimes but he's far from crazy. He loves you very much and we love you very much and you are great big brother (he is a few seconds older). We are still trying to figure out where Ben got the term "crazy" since we never use it but haven't quite figured it out yet. Steve also talked to Ben more about it last night when the boys were playing cars cause Ben didn't want to hug Tyler. Ben admitted he's scared of Tyler so Steve had Ben giving Tyler the cars and getting them to interact in a positive way with play which is all we can do right now.

As Carrie once told me, in a year or so, Ben will be one of Tyler's best therapists. He is already a very nurturing and caring little boy. I stubbed my toe the other day and he came running and said, "it's ok mommy, want a hug"; so sweet. I have no doubts about where his heart is. We also plan to get Ben in to Sib Shop support groups as soon as he's old enough to make sure he has other kids to relate too. Another U of M staff member at playgroup yesterday told me of her sister who had twins and one had a blood clot and had a lot of trouble as a newborn which causes some physical disabilities. They didn't play together at first either, but now the typically developing twin has learned to adapt the way he plays so the other twin can be included. It just takes time.

If there is a chance that Tyler doesn't have to face a lifetime of bullying and mean comments, a chance that he can have a normal relationship with his brother and friends, a chance that he can lead a happy independent life, would you not do everything you could to give that to him? Many thought we were crazy when we started this endeavor and I'm sure some still do. To those people I say, live a month in our shoes, feel the pain in your heart when your son tells you the other one is crazy, feel the panic when Tyler bends down to the sidewalk to slam his head into the ground and you only have split second to catch him, feel the anger I feel when ignorant people speak about autism but have no clue.

So on we march.. we do what we can to educate those around us about autism to help make the world a little bit more understanding and tolerant for Tyler. You may have noticed that during the democratic convention, both the Clintons specifically mentioned autism during their speeches! Both presidential candidates support autism initiatives, however it has come to my attention that Sarah Palin has reduced special education services and made cuts in her home town. Interesting since now she has a baby with down syndrome so not sure how that all plays out, but the world is changing, thank goodness. There was a story the other day about a 13 year old student in Georgia who hun himself because he was basically stuck in confinement 7 hours a day while at school. I just can't accept a world like that for my son. I can't and I won't. Thank you for joining our fight!