I hate autism. I hate how it locks precious children inside themselves, how it hides so much of their spirit from a dark world that needs their light. I hate how it exhausts mothers, fathers and caretakers and leaves them struggling, frustrated and feeling so very alone. I hate how it drives families into isolation. I hate how it affects siblings, how they must learn in an almost backward way that love is selfless and sacrificial. I hate how it divides our families, our communities and our world. I hate how it changes and eludes our understanding. I hate its relentlessness and pervasiveness. I hate that it is so expensive and difficult to treat. I hate how it seems to bring out the ugliest of our ignorance. I hate how it awakens the worst in the least human of our society, those who prey on the week and helpless. I hate the day I first learned what it was and what it meant to my family, to my baby, and to my life. I hate autism, however….
I love my son. I love ALL his differences. I love how hard he's worked and how the struggle with autism has only made him stronger. I love how I have a special place in my heart for Thomas the Tank Engine, Lightening McQueen, Legos and all the other obsessions he's attached himself to over the course of his life. I love that he loves art and music. I love how wonderful it is that he and I can communicate without words when that language barrier proves too hard to break through. I love his laugh even when it's too loud. I love how he jumps and runs and all his other stims even when it causes people to stare. I love that he now 'over expresses' his feelings because he finally gets that I NEED to know and I can't see inside his head. I love the idea that he thinks in pictures, and I secretly wish I could understand what that's like. (I think I would like it.) I love all the wonderful teachers, doctors, psychologists, and therapists that have worked with him, every one selflessly obeying the calling in their life to make a tangible difference in the lives of children like Jackson and their families. I love what I've learned about myself, my husband, my children, and our family. I love how God has used my son's diagnosis to show me the ugliness of MY ignorance. I love how he opened my eyes to all the times I judged a mother struggling in public. I love how my initial response is now one of compassion not just for other mother's struggling, but for those judging them and me. I love how I've learned through this that each of us walk a different path filled with obstacles and difficulties impossible for others to see from the outside looking in. I love the conversations that I've been able to have with my children about how there are people in our world whose brains and bodies don't work like everyone else's, about how that does not make them less, and how they should never be treated as less. I love that each of my children better understand the concept of protecting the weak, and loving the different. I love that this struggle has ignited my fighter spirit, and seeing that same flame in Jackson, I know he'll be ok.
I hate autism, but I love the upside.
What is the upside to autism? That for all the evil it could throw at me, it has only made me a better mother, wife, friend and person, and for that I will be forever grateful.
I hate autism, but I love the upside.
What is the upside to autism? That for all the evil it could throw at me, it has only made me a better mother, wife, friend and person, and for that I will be forever grateful.
I love you and what you teach me as I watch you live life. If you were not my daughter, I would envy your mother.
ReplyDeleteAs a mom just starting to learn about autism and what it is, I thank you for this blogsite and this blog in particular. I think I am still in the shock and understanding mode - shock that he really does have it and it is extensive in him, but also understanding - now I can put a name to it and all those strange behaviors and idiosyncrasies make "sense". I am still resigning myself to the possibility that his care may never cease - a possibility I have always hoped I never would have to face with any of my children. How can someone be so incredibly intelligent academically and yet not "get it" when it comes to everyday interactions and life? Yet, somehow, he also has a keen sense of perception of people.
ReplyDeleteI fell in love with this guy on paper/picture and talking with his caseworker - the whole family did. We were told things that were not true about things he knew how to do for himself. Perhaps at one time he did know. We were so frustrated with everything - he would get "better" and then it was as if we had gotten no-where - even taken steps backward. Now I see him in a whole new light - and as much as those frustrations are still there, there is a new love I have for him, too. It is all so new to me.
I have so many questions. I know that kids from hard places (foster care) are generally much younger developmentally and a lot of times physically - is this true for autism? Is it just autism I am looking at or something more, too?
What about lying? Does the lying come out of the autism, or is that learned from his past?
Hello, D. Welcome. I'm so glad you have enjoyed the blog. I write to give myself an outlet, but I love it when I can encourage or entertain others at the same time.
ReplyDeleteGetting the Dx is both a gut punch and a relief at the same time, isn't it? On the one hand, it's a condition that is not curable, and one that not a whole lot of people really understand. So, it's something you have to grieve. However, on the flip side, you finally know what is going on, and like you said, the behaviors make sense now. It's a journey, but in time you'll make total peace with it and find it has made you and the other members of your family better people.
Oh, the questions! They just keep coming. Once you get answers to some, others are raised. It's the nature of this condition. Often autism does present with a developmental age that is much younger than their physical age. My son ran about 2 years behind for a very long time, and even now, socially, he struggles to be on level with his peers. We hit the terrible twos at four. That was fun. ;-)
I don't have a lot of experience with children in the foster system, but I think that when a child is not properly loved and cared for, they aren't given the proper modeling for some behaviors. They don't develop those behaviors on time with their peers simply because they haven't been shown how. I think they also develop behaviors that are self preserving in nature. I think the lying would fall into that category. Autism/Aspergers is generally a condition that produces blunt honesty, i.e. the kid that tells you the dress you're wearing is horrible or your new haircut is weird because he doesn't understand when silence or a white lie is socially appropriate. So, I would say the lying is something he was either taught how to do or something he developed to try to protect himself.
Of course, I'm no expert. I'm just a mom. Thank you for commenting and giving me an opportunity to know a little about you. I'll be praying for you, your son and your family.