Friday, November 27, 2009


So here we go. The adventure begins. Ethan started with Birth to 3 a week ago and we're just getting everything into order now. We wanted to start slow and also slowly introduce new people. There are three: Jessica, who is the service coordinator and point person who's there to play with Ethan while working on basic life skills; Sarah, the occupational therapist; and Jen, the speech therapist. Right now he'll continue to see Diane on Fridays for occupational therapy in Glastonbury...we'll see how long that goes.

Jessica is great. I love her, and I'll tell you why: she sees things in Ethan I see. She's positive, and she's gushed over him like a mom when talking about him to the other therapists. She started first last week and then had both of them in the past few days.

Right now we're just doing play, because so much of learning is based around play. Kids NEED to play for so many reasons, and step one is really working to make play fun so Ethan can learn and also learn to relate to others through play. I spend a lot of time explaining this to Anna. I can see how having Birth to 3 here will be challenging on days she's off from school. I completely understand her viewpoint. She sees these people coming here to play and have fun with him, and me helping to play, and everything in her wants to fight to get attention too, because "hey, this is fun and I don't want to be left out!" I feel as if we're walking a very fine line between not wanting her to feel left out and get a bad attitude and needing to communicate that she has to give the therapists some space to work directly with Ethan. I've told her that to Ethan, play is work. I've compared it to taking medicine or getting a shot. I think that helped her a bit, but that kind of perspective is pretty tough for a five-year-old.

So they play, and while they're doing so they're working on things like eye contact, on Ethan reaching out and requesting for something by looking at you and beginning to use words. There are skills that seem so obvious and natural to most of us that he has to work at or be prodded to learn. Even exploration of objects...the boy needs curiosity! He's getting better at this. In a perfect world, Ethan will pick up a toy and test it, try it, do different things with it, use it appropriately, but get a little creative with it. In most cases, Ethan is not the sterotypical "autistic kid staring at a wheel on a car spinning." He'll use toys appropriately (although he gets kind of "stuck" on those with lots of lights and music. The challenge is getting him to stick with a toy for awhile, then move onto another toy for awhile, be creative, and maybe even interactive. He's more likely to play for a minute, on his own, then even if he's having fun, get up and do something repetitive or comfortable, like try to climb up on the kitchen table or to get into the refrigerator. From what I've read, this has something to do with emotional regulation. It's like, he has these feelings sometimes, and even if they're good feelings, he doesn't quite know what to do with them. He's sort of overwhelmed by senses and emotion, and the way to calm himself down a bit is to do something predictable, like opening and closing a drawer, that makes him feel kind of safe and settled.

We've started all of this and I (like Ethan, I guess) struggle with these feelings that want to overwhelm me. I want to shout from the rooftops: "Please work! Please, please, please help my little boy!" I come at this I think with a bit of a different perspective than many parents. My only experience with autism is so incredibly severe that I struggle with hope. Can I dare to hope? There are people out there (understandably so) who go into this hoping and praying that these therapies will just make everything go away and their child will somehow lose the autism diagnosis. That happens, but not often. I almost approach it from the other way. Everything in me says, "Please, just help him to talk! Please...I know he may be different and quirky and stand out from his peers and all of that but please...I want to talk with him, back and forth, and for him to not be a grown-up sitting in a corner and moaning and hitting himself when he's frustrated and having bathroom accidents. I want him to be able to care for himself and not rely on caretakers who get paid $10 an hour and want to be somewhere else. I want him to be able to harness that musical interest inside of him and not let it go to waste. I don't want him to be trapped inside himself, never realizing the potential that is there." I don't know if the "please" is directed at the therapy or God or just somewhere out there into the atmosphere. I need help hoping. I guess that is what I direct to God. I need help hoping and having faith because I fear disappointment and more pain.

There are people out there who are brave enough to believe for big things. They take their faith and they don't "settle." And they are also brave enough and strong enough to believe in God's goodness even if they don't get all of it. I want to be one of those people. I heard Joyce Meyer once say she'd rather believe big and get half of it than believe for nothing and get all of it.

Sometimes I think of Beth Moore and the session in Esther when she swallows her fear and decides to go before the king. "If I perish, I perish," was her approach, but she'd decided the fear was no longer going to stop her from doing the right thing. In the study Beth Moore talks about the way we torture ourselves with what-ifs, and that our goal should be to get to a place where we can truly trust, "If ______ happens, then God will take care of me." There are so many blanks that could be filled in, so many unknowns. Getting to that place is a true dying to our selves and stepping into a life where we relinquish our illusion of control.

The control illusion can be such a trap when it comes to all of this autism stuff, especially for a mom. I feel this all of the time and from the blogs I've discovered online there are so many moms of kids on the autism spectrum dealing with the same feelings. We are the primary's like what I'll hear many times in MOPS, about how important our role as moms is...but reversed. That's meant to be an encouragement but with autism it feels more like a weighty assignment impossible to complete. This voice says: "He's depending on you! You have to get him the help he needs...the exact right help, the exact right amount of help, and you must take advantage of every opportunity you have to help him learn and grow. And you must make sure your daughter is not neglected and doesn't develop resentment, and you must not forget your husband, and you must take care of yourself, and..." The list goes on and on. There are a lot of "you's" in this paragraph. That's what stands out. That that line of thinking takes me back to a place where I think I have to do it all and once again I wrestle control away from God. I have to be responsible, yes, but I can't be responsible for being perfect and somehow "fixing" this entire situation.

That can seem like a frustration, but I long to see it more clearly -- as a blessing.

Sometimes I think about how much of this...Ethan's diagnosis, my past, how I approach the situation...depends on perspective. I have seen my past, growing up with Andy's autism, as haunting me and at times sucking away my ability to hope and be positive. Yet what if I was to remember that God truly has taken care of Andrew, that he became (at least a bit) verbal when no one expected him to (age 12), that he still learns today and that he lives in a nice home and is relatively happy? "If __, then God," I can remember. I could think about how I felt overly responsible as a child and how unfair all of that was, or I could realize that that experience will make me more sensitive to preventing the same thing from happening to Anna. I could be bitter about the way my parents didn't provide much comfort or security for me and Nate throughout the situation...there was a real disconnect between their strong Christian faith and how they approached Andy's autism. I never got a sense that God would take care of us or that it was okay to trust Him, that He wasn't out to get us. Or I could be determined to find the good in the situation and learn how to keep my emotions in check in front of my daughter so she is not left feeling scared and alone. I could think about how hard it is to have my only prior familiarity with autism be such a severe case, and how that wants to gnaw at my faith and hope, or I could view that as making me more profoundly grateful and appreciative when Ethan makes even modest gains. His accomplishments will seem even bigger and better when I compare them to the standard of severe autism that received essentially no early intervention.

For so long I've felt as if my past was "damning" and that I was stuck in some sort of repeating pattern that was almost like a cosmic joke on God's part. Or Satan's. Kind of like, "Ha-ha! Thought you were done dealing with this...I'll throw these demons right back at you. I'll give you everything you ever feared and see how you deal with THAT." But maybe there is an opportunity here to learn than that my past can serve me well -- and that it doesn't have to repeat itself. It reminds me of one of my favorite verses, from somewhere in Romans. Do not be overcome by evil, but overcome evil by doing good.

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