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.

Wednesday, November 18, 2009

If I Were a Butterfly

When I was in second grade and attended a Christian school, we did one of the Kids Praise plays from the Psalty series that was so big during the eighties. It was the first Psalty album, where the kids discover the songbook and learn about praising God. My part was "Linda" and I was so excited to get my very first solo, in the song "If I Were a Butterfly." Each kid sang the part of a different animal thanking God for making them just as they were, and I was the fish. I distinctly remember carrying a cardboard fishy I had painted green and sticking my head through the little hole for my face while singing:

"And if I were a fish in the sea, I'd wiggle my tail and I'd giggle with glee,
But I just thank you Father for making me, me."

I hadn't thought of that song in years and years, and then on day about 6 or 7 years ago, we were camping out in Western New York and from behind a growth of bushes I heard a little voice singing:

"If I were a butterfly, I'd thank you Lord for giving me wings.
And if I were a robin in a tree, I'd thank you Lord that I could sing..."

With all of my heart I wanted to join in and start singing the end of the verse, my part, the fish part, and surprise her out of nowhere, but I chickened out. Hearing the little girl brought me back and awakened the memory. I thought of how proud I was that night, and how disappointed that my mom couldn't be there because she was in the hospital after having Andy. I thought about Lynn Connors, who opened the song with the butterfly part. She died about 10 years later after having an asthma attack. I thought about all of us with our sloppy, colorful, cardboard cutouts and the cuteness of it all, but I still didn't think of the words.

I have a habit of singing songs and not listening to the meaning. I've been known to take years to really pay attention to what a song is actually saying (and then sometimes realizing once I find out, I don't like the song anymore). But this case was different. Not long ago I started to sing the song to Ethan, making the little trunk with my arm for the elephant and snapping my arms for the crocodile smile. Then I was singing and gesturing to the chorus, which goes:

"Cause you gave me a heart and you gave me a smile,
You gave me Jesus and you made me your child,

And I just thank you Father for making me, me."

...and the thought came to me: Do I believe it? Do I know that I know it? For me, for Ethan, for all of us? I sang that song as a seven-year-old who had already learned to not love herself, to base her value on what she did or on who approved of her.

I was reading a book this weekend by Karen Kingsbury about a teenager who'd gotten an abortion and was living with the pain of it. There was a part where through her grieving she talked about naming the child she had aborted Amanda, which meant worthy of love. Worthy of love. The words jumped out of the page at me. We are all worthy of love. I felt the words wrap around my heart like a blanket. Worthy of love. Our past doesn't matter. The way we started doesn't matter. Our defects don't matter. We are all worthy of love. And God has an individual plan for each of us, no matter what.

Now as I sing the song to Ethan, and watch him attempt to touch his mouth for the smile or touch his heart, my own heart is singing. The words are meaning something. I thank God for that.

Monday, November 16, 2009

Tomorrow is Day 1

Tomorrow Birth to 3 is coming, and I am grateful for that, and thinking. First of all, I have to say that I caved. I wrote awhile back about choosing a provider and wanting to do Floortime and comparing it to chemo vs. alternative medicine and all that, and in the end I caved. I chose the "chemo" treatment. Meaning, I chose the proven stuff that I'm just praying will not break his spirit: ABA therapy. This does not mean I'm not in love with the idea of Floortime, of following my child's lead, and working to make an emotional connection with him rather than just getting him to perform desirable behaviors by providing him with rewards. No, I think the Floortime people are really onto something. It's that I couldn't handle how it was being presented through the Birth to 3 program that was offering it.

They always say trust your instinct. This was hard because my instinct told me the concept was great but the way it was being administrated, through this provider called Kaleidoscope, was not so great. If only I could describe the feeling I got while talking/planning with them. Let's call it the feeling I got walking into any government office in Springfield. Let's talk about Commerce High vs. Central back when I was a teenager. There was this feeling of mediocrity and low expectations. That's not exactly right. There was just some disorganization and the way they approached things made me feel as if there'd be a lot of playing, art and music going on, but would Ethan learn anything he needs to know in the real world?? And while he's still so young and he needs time to just be a kid, he also needs more direction and help with life skills than the average kid. So here we go tomorrow, with Creative Interventions, a program based out of Granby that comes highly recommended.

If I believed in mantras, I think mine would be this: "Love him for who he is, but help him to be all God called him to be." I need to remember that. I need to remind myself of that, again and again and again. That, and that he's not mine. How many times have I heard people say that? Our children are not ours; they are only on loan to us for awhile. If I know that, then I remember to let go of the burden that sometimes wants to load itself on my back: that I have to somehow find a way to fix everything. I've attempted to carry that kind of load all of my life. It's time to let it go. There comes a time, I'm learning, when our eyes open and we see that the sense of control we have is really an elaborate illusion. And that can be the beginning of our freedom.

Wednesday, November 11, 2009

A Godsend

Some days, I'm okay with all of this. One night in particular, I felt the incredible presence of God like never before...I couldn't even describe it to you. All I know is that I didn't have to work it up, I wasn't sitting in a church service overcome by emotion, it was the still of the night and God felt so real and I knew I was going to be taken care of and Ethan would be taken care of and He had a plan through all of this.

Then there are bad days. Today started out as a bad day. I guess...I guess I can take it sometimes if I am down and depressed about this situation. But when others show their frailty, for some reason that unhinges me. There have been numbers of times we've been sitting watching TV and this commercial comes on with this cute, talking little (read: normal) boy and he starts to get sad and even have tears in his eyes. Then suddenly I'm bawling, because Dan never cries, and if he cries, then all of this has to be real, and it has to be bad, and then the sadness feels as if it truly is wearing a hole in my heart. That's how I feel sometimes: as if there is a literal hole in my heart, that literally aches. I think the worst kind of pain has to be that which is associated with something that can't be changed, that can't, save for divine intervention, just be whisked away, something that is beyond one's control.

So today I could tell my mom was down. She thinks she so bravely masks her feelings but she doesn't...she wears everything on her sleeve. Time and counseling have taught me she wears her fear on her sleeve as well. For someone who contends to be so brave she is extremely fearful. So she came back from grandparents' day at Anna's school, and I knew she was down about Julie's lumps removed from her leg, and about Ethan, and other things, and I could just feel the weight crushing me again. And when it started crushing me, I started wondering things like, "What if Ethan really does end up like Andy?" "What if he's that bad?" And by the time I was on my own in the car while she watched Ethan at home I was crying and crying and screaming "WHY?" at God and of course hearing nothing back. My throat is still hoarse 9 hours later. I knew I had to call Maggie.

Maggie is from church and has a daughter with Down syndrome. I met Maggie several years ago and have always liked her. When I told her about Ethan a few weeks ago, she encouraged me to call and asked if we could get together.

Maggie is a godsend.

I can't describe what it's like to be able to talk with someone who understands. My mom understands, but there's too much raw emotion there. It's too familiar. Now I know...someone else has waited until everyone else leaves the house to sink into the floor and cry and cry. Or closed the bathroom door and sobbed and then gathered herself and went on with real life. Or felt the gaping hole and wondered how it would ever heal.

More than that, through all of that, her faith has grown stronger, and she's more reassured than ever of exactly how wide and deep God's love is for her.

I want that.

Thank you God, for Maggie. I felt like I was going off a cliff today and I'm grateful someone was there to put on the brakes. I needed to be reminded there is a purpose to my pain. I needed to be reminded that God is good, all of the time.