Monday, December 28, 2009

A Child's Love

People are always saying you learn about unconditional love when you have kids. For the longest time I thought that you learn to love unconditionally when you discover the love you have for your children. I'm starting to realize that even more so, the reverse is true: the way we truly learn is by experiencing our kids' love for US.

Several years ago this community educator came to MOPS and spoke about some of the abuse situations she'd encountered while working with families. I remember her recalling a little boy who had been thoroughly mistreated by his mother...beyond that, abused really, and neglected, yet he still looked at her with such love in his eyes. And more than anything, he still wanted to be with his mom. He still even looked up to his mom and looked for her approval.

I heard her speak and wanted to weep, but her point was to stop being so hard on ourselves. The love that comes from a child is so pure, so forgiving, that, while we aren't given a license to mistreat them, we have to know that we're not scarring them the way we sometimes fear we are with our slip-ups and lost tempers here and there.

Today I was tired, my knee hurt, I was struggling with fighting off all kinds of icky thoughts, was snappish at times, lacked energy, and was anything but supermom. I wasn't horrible mom, but I wasn't anything special. Yet at bedtime Anna told me what she tells me almost every night. "I love mamma soooo much," followed by, "I love you more than all the love in the world," with many, many hugs and kisses. And Ethan? Well, Ethan. I can push and prod him and yell or cry and it's impossible to scare him away. He still breaks into a huge smile whenever I come home, still wants hugs, still acts so in love with me sometimes, despite all of this autism stuff.

I tucked them into bed tonight and thanked God I hadn't messed up too badly today. Then I heard Anna sweetly singing some sort of lullabye. A few minutes earlier Ethan had been attempting to sing "Twinkle Twinkle Little Star." These are the moments you just want to bottle up and hold forever. But beyond all of the cuteness I just wanted to bask in the moment of knowing that two little people loved me despite my being so profoundly imperfect. And hopefully, remember there is a God close to me who loves the same way.

Wednesday, December 23, 2009

A Beautiful Gift

Last night I couldn't sleep (too much sugar before bed!) and so I got up and finished a Karen Kingsbury book I'd been reading. The book is in part about a woman who was always afraid of losing her firefighter husband. On 9/11, her worst fears were realized, and eventually, through the healing process, she regrets spending so much time worrying instead of enjoying the time she had with him. Moving forward, she realizes she has to do what her husband had always urged her to do. Choose life (from Deuteronomy 30 - "I have set before you life and death, blessings and cursings. Now choose life...").

I closed the book and realized I had something to do. God's been kind of "whispering" in my ear about this for a few weeks. You know how there are times when you hear people say the same thing, in different ways and at different times, and you know there's a message that's trying to get through to you?

The past has been gnawing at me for awhile now. But it's time to let it go. It's time to stop approaching every episode that occurs with Ethan through the lens of my childhood. I thought of it the other day when I burst into tears because I was reminded of something that happened to me as a kid, with Andy. Again. It's not that it's wrong to grieve. It's when grieving becomes like an old tape that you pull out and play, more out of habit or obligation than anything else. I thought it while listening to Joyce Meyer the other day, who was talking about not staying stuck in the past and who quoted Isaiah 43, where it talks about not dwelling on the past because God is doing a new thing. I especially thought about it the other day when I ran into an old friend at the mall and was telling her about Ethan. The second sentence out of my mouth was, "Well, my brother has severe autism..."

I drove home thinking about that. Why had I said that? It was superfluous information. She didn't need all the details, yet I felt this urge to constantly link Ethan to my own past. The habit had become ingrained.

Beyond that, the habit of worry and fear and dread has become my method of operation for years and years. That's another thing I was feeling last night, as I finished the book. Regret. My eyes became opened just a little more to how much time I've wasted worrying. I thought of my pregnancy with Ethan, tinged with fear. And from the day he was born, there was always something to worry about. He had jaundice. He took awhile to smile. Nursing problems. Some of them may have been autism-related in retrospect, but that's not the point. I sat there last night and had trouble thinking of many times I had just sat and played and truly enjoyed my little one for who he was. True sorrow flooded within me, as a remembered his "babyhood," and how I was always looking for something to be wrong. Yes, something did turn out to be wrong, but what had been the point to my stress? Was I so eager to protect myself from being rocked by a bad diagnosis that I completely stopped to just enjoy the sweetness of every day?

My grandmother died years ago; we were very close. I am very much like her. She was a worrier, a fretter, a crier. She was also a sweet, dear woman who happened to develop Alzheimer's in her seventies. Someone said to me wryly not long ago that the years she lived with the disease were probably the only time in her life spent not worrying. The thought stopped me cold and made me want to smile and cry at the same time.

I can't live my life waiting for the other shoe to drop, waiting for everything to just collapse around me. I've not just done this with Ethan, I've done it with nearly everything. I've lived too long dreading tragic possibilities that may never occur. I've known this for some time, but it's one thing to know it intellectually, a whole other thing to feel it down deep inside.

So God and I had a little talk as I stared out the bathroom window in the middle of the night. The snow looked so beautiful in the darkness. As I prayed, I felt a peace come over me. Not only that, but the joy of a weight being lifted off my back. I looked out again and saw that I could see the stars, lots of them. More than a usual night, living so close to the lights of Hartford. A split second later, I saw a shooting star. Just one. I felt as if it were just for me.

This Christmas I'm thanking God for one of the most beautiful gifts I could ever receive: a different perspective. I'm thankful for a new desire to fully taste and breathe in each precious moment, and to stop holding the future captive with my fears. This will be a process, I know. But I'm ready to begin.

Friday, December 18, 2009

Little Breakthroughs

There was a study out just recently about people's happiness and the gist of it was, "If you think you're happy, you are." That's so simple, yet so profound. I understand the benefits of positive thinking now better than ever.

I could choose right now to think about how other kids Ethan's age are speaking in sentences. Or I could look at the strides he's making and feel the joy bubble over. These are some little things for which I am profoundly grateful:

- Improved joint attention, just in this past month. Joint attention means, when I point at something and tell him to look, does he look or just keep on staring at whatever he wants to stare at? This has really improved in particular in the last week. Joint attention means he cares enough to leave his own little world and check out what someone else is suggesting.

- New words and a return to words he was saying but had stopped saying (like kitty). Waving and saying bye-bye. Today I got a "hi" for the first time in a loooooong time. Lately I've been hearing lots of animal and food words. And my favorite - CD - is clear as day.

- His newfound love of hide and seek, complete with him saying the word hide or seek, and looking for me with pure joy on his face. He'll play this game with anyone at any time.

- This one was so cool. In occupational therapy today she was going through some of the usual things that are part of this assessment form called the Peabody that she's using to track his skills. At our outpatient appointment she really works on the skills rather than social stuff. His gross and fine motor skills are for the most part either on target or not that far behind. Well, as part of the assessment, she had him play with blocks, and the first step is to get him to stack 6, which he can do. The next level they check for right at 24 months is if they can imitate the person making the blocks into a train shape, complete with a block whistle, and then begin to move it and pretend it's a train. The first few times Diane did this (she tries it about one a month) he didn't even pay attention and didn't get that part at all. Today I could sense that he was watching more closely. Then, when Diane was done, he began to put the blocks in a row, attempted to create a whistle, and even said his own version of "Choo! Choo!" Both of us had our eyes bugging out of our heads, and I almost had tears in my eyes, I was so proud. That, right there, is the birth of pretend play. I can't tell you how proud I was of him.

I am amazed how play, or thinking about play, is dominating my life now, so much more than when Anna was Ethan's age. I'll give an example of how play with Ethan is fun and work at the same time. Today he wanted to play in the giant cardboard box again (from a printer we just bought; both he and Anna love it). So I thought about what we could do with the box that we hadn't done before. Balls came to mind. I found every ball of every shape I could and began putting them in with Ethan already in there. First I worked on the concept of "in" and "out," saying the word each time I put them in and he put them out. Then I worked on labeling the balls by color, size, etc. Then I switched it to counting the balls. Last I worked on having Ethan "call" the balls back to the box, to compliment the other work I've been doing to help him learn how to call people to him.

You have to switch up games with Ethan or he takes the game very literally and thinks you only play it that one single way. This teaches him to "think outside the box" (pun very much intended!) and also flexibility. We played these varying versions of the ball game for a half an hour, and he could've done it longer. For that, I am also grateful. Thirty full minutes of play with my little guy. Thirty minutes of him engaged with me, wanting to be with me. When Anna was little I hate to say I'd have been wanting to get away and check the internet or something. But Ethan is reminding me of the simple, refreshing joy of losing oneself completely in play and being complely immersed in any given moment.

Wednesday, December 16, 2009

Challlenges and Rewards

I remember taking a quiz about five years ago, one of those silly things on the web. This one was titled "How Autistic are You?" and I just couldn't resist. I don't remember my score on this oh-so-scientific survey, but it wasn't anything off the charts. There were questions like: Do you avoid crowds? Not really. Do you have trouble reading people's emotions? Definitely not.

But as I've observed Ethan these past few months and learn what his therapy is attempting to teach him, I'm recognize some vaguely familiar themes...his inflexiblility at times; the way he gives up easily without persistening; his resistance to trying new things; his sometimes lack of curiosity. I've had to sit back, swallow and admit it -- that's me.

Thankfully, Ethan so far does not seem to have these traits to an exaggerated level the way some kids on the autism spectrum do. He doesn't exhibit the kind of rigidity that would make him insist have on having the same cup and plate and eat in the same spot and the same time, for example. He will continue persisting with something frustrating if encouraged, and he will explore objects for a bit and play with new toys, if they are intriguing enough. But it's work for him. And as I begin to help him, I realize it's work for me, too -- but we both have an amazing opportunity in front of us.

As a child people called me very creative and imaginative. I even attended a special program one summer for "creative kids." And to some extent that was true. The people at this camp were impressed with the Lego creations I'd build for my Fisher price people...only to be destroyed by my various invented natural disasters. Of course, they didn't know that I always played that game. I rarely "mixed things up." I had my familiar games, and that was that. I liked to reread books rather than find different ones. I liked to play the piano by ear and learn songs, true, but usually ended up going back to the same old songs, rarely learning new ones.

As an adult, I like to stick to my favorite restaurants and favorite dishes, because why be disappointed by something that doesn't taste as good? When playing with the kids I usually go back to the same routine and same games, rarely mixing things up. A few years ago I began to comment to Dan on how disappointed I was in my lack of curiousity or willinginess to try new things as a child, and how it's affecting me to this day. Basically, I don't know how many common objects truly work, because I never asked or paid attention, as a kid. One reason I didn't try new things is because I got frustrated easily and wasn't really taught to persist (my dad had a soft spot and was always doing things for us). So I learned to just stop when something got too hard.

But now, with Ethan -- now I have no choice but to think of a new way to approach a game...or Ethan will get "stuck" and want to play it only that way. The play will cease to be a learning experience and begin to become a routine. Now I have to learn to peservere as I work to engage him. When he's in a "mood" he won't willingingly play. You have to work and woo him, and you have to not take it personally, because he can act as if he couldn't care less and is completely ignoring you, but after much persistence, suddenly he jumps in and is ready to play. Now I have to keep learning, studying, exploring, and creating new ways to reach him.

I feel that as we work to try to rewire some of Ethan's brain, we are doing the same with mine. I am blessed to have the opportunity, because I don't think it ever would have happened, otherwise.

Tuesday, December 15, 2009

The Latest

Our "new normal" for the next year is taking shape. Our start has been a little bit bumpy, but not too bad overall. One thing I enjoy on a personal level is the interaction. I didn't realize that I actually feel energized at times having someone to talk to every day. Being at home with the kids, there were in the past days when I'd speak to no adult except the one at the Target or Big Y checkout, but I didn't realize that bothered me. I thought I was too introverted to really mind. Now I'm not so sure.

So, this is what's happening. We have Jessica, Ethan's main therapist, who's here Monday and Tuesday afternoons and Wednesday and Thursday mornings. Jessica is the overall overseer of Ethan's care, and the ABA provider, although we haven't done much ABA therapy yet. Mostly what she does is play with Ethan, try to engage him, while subtly working on speech at the same time. I LOVE Jessica. She's so positive, she's so encouraging, and she sees things in Ethan that I see. She sees that he has the ability to learn quickly. She's always telling me how smart he is. She has enthuiasm and genuinely likes Ethan. Even though he can be resistent with her, he likes her.

Sara is the occupational therapist and comes on Tuesday afternoons (partially overlapping with Jessica). She helps with Ethan's sensory issues (how he's reacting to sounds/lights/textures, etc.) and works on fine and gross motor skills. Again, most of this is done through play. Sara has only been here twice and Ethan's just starting to get to know her, but last week he started to open up and let her do a few things with him. Jen is the speech therapist and comes on Wednesday mornings (again, overlapping with Jessica). She's only been here once so far so it's hard to get a read on her, but Ethan seemed to already be starting to warm up to her.

Then on Fridays we go to Glastonbury for more occupational therapy with Diane. This was part of the interim therapies set up for Ethan when he was diagnosed, but Diane wanted to stay with him for awhile even after Birth to 3 got launched because she didn't want to interrupt his progress. A typical appointment with Diane usually involves things like: building blocks, doing puzzles, playing with playdough or shaving cream, crawling through a tunnel, or playing with balls. Again, it's all play, but play with a purpose. And Ethan needs to learn how to play. He needs to learn how to explore objects, use them correctly rather than just focusing on one part, use them creatively, and know how to transition to another toy appropriately. These are all things that come naturally to many children. Our appointments with Diane are sometimes tough because she has this habit of making discouraging comments (like "oh, you're just not going to give me any eye contact today, are you?") or shaking her head with resignation when he's not responding to her. It frustrates me, yet then she'll end our sessions saying positive things like, "I'm really impressed with his progress" or something to that affect, and I know she means it. I think she just gets frustrated with his aversive behavior.

That is Ethan's biggest challenge. He tends to just want to run away and not deal with a situation. He rarely tantrums...he just avoids. It's already getting better with Jessica, at home, but with Diane, who he's been seeing for two months, there are still issues. He's doing three times as many activities during a session than when he first started, but still, he tries to get up and go out the door. Sometimes I wonder if it's because he can sense Diane's negativity and frustration with him, as opposed to Jessica, who is so bubbly and positive. Other times I think about how much we're asking of him. Yes, we are mostly doing play, which should come naturally to a child, but it's a challenge for him, and we're talking about nearly 10 hours a week of focused play, with people he doesn't know that well.

One of my biggest challenges is to take a deep breath and take each day at a time. And to find that delicate balance of loving my child unconditionally while still wanting to help him reach his full potential. That sounds great in theory, but if you don't have the balance down, it's very easy to get tense with therapy...meaning, to think, "Are we doing the right therapy? Are we doing the right amount?" and to start mulling on "what-ifs." More than ever, I need to place Ethan in God's hands and believe He knows what's best for my child, and that if we're off somehow, He will show me.

Thursday, December 3, 2009

Driving in Circles

Yesterday I went to visit Kelly and baby Jamie in the hospital, and every time I go to CCMC I end up not being able to figure out how to catch 91 north in Hartford. It was a lesson in futility...I'd strain my eyes for highway signs, get stuck behind puffing buses, and miss turns because I couldn't see due to being behind said buses. At one point I actually found a 91 N highway sign that had literally been scratched out so that I could not tell if the once-existing arrow had pointed straight or to the right.

I found myself completely infuriated, accidentially taking a wrong turn and being stuck driving over the river to East Hartford, knowing I'd have to turn around, go back to the city, and once again find the right way home. Somehow I managed to find Route 2 and realized I was on a path into the city I'd never taken. I'm not even sure of the bridge name, but I was crossing the river back into Hartford, straight into the heart of downtown, and the view was fabulous. I'd never realized Hartford could look so pretty, particularly at sunset, and twinkling with festive lights. The few moments back over the river and into the city were almost worth all of my wandering. I found myself thinking of that word again -- perspective.

Sometimes we all get frustrated when we are moving but seem to be getting nowhere...or going in the wrong direction...or forced to take a detour. We have our destination in mind and we just want to leave where we are and get to where we are going. We have plans and schedules, darn it, and no one and nothing should attempt to deter us.

But sometimes roadblocks force us to really stop and look at our surroundings. We notice things we'd never laid eyes on before, and something like appreciation fill us. It's like being stopped dead in a traffic jam, and noticing a patch of flowers on the side of the road that you never would have seen, rushing by at 70 miles an hour. Sometimes we're asked to take a path that seems to be completely unsavory. Yet at second glance, making our measured way along a route we didn't choose, we learn to appreciate the journey and discover the treasures it holds, if only we are looking.

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.

Friday, October 23, 2009


Every time I sit down to write something, the words won't come. The thoughts are there, too many, jumbled, almost competing to see who makes it first on the screen. No one wins. I don't write because I feel overwhelmed. Sometimes I feel so overwhelmed that the effort to write outweighs the benefit of just getting it all out of me.

I will write about yesterday. God, it was a gorgeous day. Yesterday was what I'd call a goodbye to both summer and fall. The temperatures were glorious...I'd have to say in the mid-seventies, and the foliage was at its peak. In the night, winds blew more leaves off the trees and I'd say we are heading past peak now. A bunch of people from MOPS went to Foster Farm in South Windsor. I showed up late with Ethan because I wasn't sure if he'd be too interested in the hay ride. So there we were at Foster Farm, in the glorious weather, under the deep blue sky, with a few of the reds and oranges and yellows of maples, and there were several times I just wanted to stop and breathe deep and drink in the beauty of it all. There are so many times I feel as if I just have to stop and at least whisper to God, "thank you."

And there were cows there, and sheep and a turkey and chickens and Ethan was so cute wanting to look at them, and I was so proud of that. Proud and a little frustrated, because he only wanted to look at the animals or crawl through a few tunnels, and I couldn't get him over to where most of the MOPS people were. But then I wondered if I wanted to go over there, because my insides are all over the place.

I feel a sense of "other-ness" sometimes. The feeling grows stronger when I am with people with perfectly healthy children. I love their kids and I don't fault them for complaining about little things (don't we all sometimes?), but when I sit there for too long I start to get this ache. This especially happens when I see kids Ethan's age who are starting to speak in sentences. I get this ache and my head starts to throb a bit and I feel like I'm breathing shallow breaths. I'm barely breathing, and tasting something bitter in my mouth, and what I'm really doing is trying to shrug the weight off. The weight is...not so much the knowing about what is going on with Ethan. It's more like...refusing to accept a burden of shame I lived with, growing up. The burden said, "You're different. You're not good enough. You're not accepted. Your family is weird. People don't like you. You're rejected." And when I close the door on that thought, others try to barge in. Like: "People are thinking your son is weird. He's so behind. Maybe he'll never catch up. He'll be one of "those" kids in one of "those" classrooms. You're the rejected family once again. Why can't you just fit in? Why can't you just be like everyone else?"

When I'm battling this, I lose all energy to try to make small talk. I just want to run somewhere and cry for a little while, until I feel stronger again.

That is how I felt at Foster Farm, and then I thought of Kelly. Kelly and her husband are dealing with something absolutely horrific right now -- their sweet three-month-old daughter has been diagnosed with an extremely rare form of liver cancer. I thought of tiny Jamie in the hospital lying connected to tubes. I thought of the long halls and flourescent lights and doctors in white coats saying words that make no sense. My heart began to hurt again, but this time thinking of how much I'm sure Kelly wished to be outside during this beautiful day, just taking a walk with her two children or doing the simple things that we take for granted when we can no longer do them.

When I thought of Kelly I knew I had to call and try to visit them in the hospital. In the past, this is something I would have talked myself out all sincerity, I'd convince myself that I'd be imposing or that I didn't really know that person all that well to go "bothering" them. But something inside me was more insistent, and so I called, and although we weren't quite able to connect, I will be going and visiting as soon as possible.

At Foster Farm while I blinked back tears I knew that while I may not be able to truly fathom Kelly's situation, I could relate to one thing -- the feeling of having life throw you a curveball, of having normal, everyday life tilted out of focus, and of feeling that while people may try (or sometimes, sadly, not even try), they can't really understand what you're going through.

Ethan is deepening my empathy and helping me soar above my fears. In the midst of pain, I can embrace so much that is precious.

Monday, October 12, 2009

How To Think

Ethan had another speech appointment yesterday, as part of his "interim" speech and OT before the Birth to 3 stuff kicks in. We go over in Glastonbury, at an outpatient office for Connecticut Children's Medical Center. They've got all kinds of offices connected by the same waiting area, so there are kids with broken arms alongside those going for speech or having their heart imaged. I saw a little boy who appeared to be deaf. I look at the kids and their harried parents and think, "People are going through all kinds of things." It's not just me. It's not just anyone.

Then I was reminded of a Philip Yancey book I read not long ago, where he interviewed a famous Christian doctor who has spent his life working with people who have leprosy. Yancey had asked him the typical question, along the lines of why he thinks God would allow such horrifying things to happen to people, in their bodies. The doctor didn't even want to entertain that. Rather he chose to marvel of the complexity of our bodies; the intricacies of our design; about the amazing confluence of factors that have to happen in order to create a life. The greater question, this doctor thought, is how it is that so many of us come into being at all, and without substantial physical defect, when the odds, just approaching it from a scientific sense, against that happening are so great.

I watch the speech therapist watch and work on teaching Ethan and I wonder what she thinks of him. They didn't tell me, in either the speech appointments or the OT evaulation he had, "oh, he's at this level, and we're going to work on getting him to that level." They just start working. So I sit and wonder, "What do you see in him?" "What is his potential?" But I don't want to ask, because if they don't believe in him the way I believe in him, I don't want to hear it.

Every day, sometimes many, many times a day, I have to remind myself of the trouble I borrow when I spend too much time imagining. I imagine what the therapists might be thinking, imagine Ethan in 5 years or 10 or 20, imagine mean exclusions from people that haven't happened...all sorts of things. And since I'm working on a Bible study based around the same topic, all I can think as I look at my brain at the present and past is that I've expended so much energy thinking about things that never happened. I think we truly can handle any thing God hands us, if we are taking it one day, one moment, one breath at a time. Why have I so often borrowed trouble? Thankfully, through a most unexpected way, I have an opportunity to learn with Ethan. He is learning how to communicate, while I relearn how to think.

Friday, October 9, 2009

The Great Leap

I wrote this just before I had Anna, and I thought it fit quite appropriately here, as I start this blog. I titled it "The Great Leap:"

I glanced at the clock again. Forty minutes. I’d been sitting there, flipping through the one dog-eared magazine within my reach and watching every other pregnant woman who entered the office come in and within minutes get called to the back for their appointments.

I was there for a quick 36-week ultrasound, just to make sure the baby was head-down. Thankfully, they don't require you to guzzle gallons of water for an ultrasound this late in the game, or else I would have been really antsy.

Still, this was ridiculous. The office wasn't that crowded. They didn't seem to have fallen behind schedule. I'd already been out of work for an hour and needed to go across the hall for my appointment with the midwife once the ultrasound was done.

Five minutes later, the door to the back creaked open and a pregnant woman with a clipboard called my name. I waddled beside her down the hall to the exam room.

"I'm so sorry you had to wait so long," she said, and I could tell that she meant it. In the exam room stood another pregnant woman, the ultrasound technician, ready to get to work. I crawled up on the table. The cool gel on my belly always startled me a bit. But then the picture appeared, a picture I couldn't make heads or tails of, but that was still so cool, because this was my baby, my first baby, a little girl.

"Ah, there you go. Looks perfect," the technician said. Then, as she continued to look around, said in a low voice, "I'm sorry it took so long to get you in here. We had a problem with the woman before you. We found an abnormality in the baby."

A silence hung around us that said many things. Here stood the two pregnant women, thinking about finding our worst nightmare realized. All thoughts of my long wait, every last remnant of irritation, fled my mind.

"When that happens, we have to call the doctor in," she was saying. "Now the patient is across the hall, meeting with the midwife."

Five minutes later, I was sitting in the same office, waiting to see my midwife, wondering what was going on behind closed doors. A young woman sat beside me, alternately distracted by a rambling toddler and grinning at a baby in an infant carrier.

"How much longer?" the little boy was demanding. "I told you, we have to wait for auntie," the woman tiredly replied.

A couple walked in, the father holding a little boy with deep, dark brown eyes. He scrambled over to the other boy and they began playing together.

I sat watching them, the same two words echoing in my mind. What if?

What if that was you back there? Immediately I was ashamed at my smug sense of relief that it was not. You know that feeling. We all have it but we don't like to talk about it. It's that quiet sense of buoyancy we get when something bad happens to someone else. Oh, we ache for them and we grieve, but there is a secret part of us that feels the most subtle sense of joy at being spared.

Spared this time, that is.

I am not naïve. If anything, I lean on the side of thinking that anything can happen. I instinctively imagine the worst. This may just be part of my nature, or it may be because I've been on the other side. My younger brother is severely autistic. I know what it's like to watch someone grow up different than everyone else; to see the people subconsciously shrink away, not knowing how to relate; to have a family in chaos at times because of one person who can't help the way he is.

But I don't yet know a mother's pain. This is what hits me, as I listen to the high-pitched babbles of the two boys. For many of us, children are almost a given; a natural progression of life; an undoubted miracle. But they are also a risk -- not just to our prior, carefree way of life, but to our hearts.

I worry I'm not strong enough to have mine broken.

The nurse called my name and I headed back to have my weight checked. I heard a midwife in the waiting room, talking to the woman with the two children.

"Why don't you come back here," she said in a kindly voice, "and I'll explain what's happening with your sister..."

I murmured a few prayers for her. Then I prayed for all of us who have taken this quiet leap of courage, because we've chosen this most precious way to open our arms, and let go of all we can't control.

Tuesday, October 6, 2009

How This All Started

When my little guy, Ethan was born, my friend Lyssa gave me a congratulations card that included a Bible verse she had felt led to share. I almost thought it a little peculiar when I read it. The verse was Isaiah 43:1-3:

“But now, this is what the Lord says – he who created you, O Jacob, he who formed you, O Israel. Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead.”

I felt a little unsettled after reading it. Did it mean Ethan was going to be a fearful person? Then there was the note Lyssa had added, about the verse being for not just Ethan, but his parents, too. In the back of my mind, I wondered, “How could she have known?”

At the time, Lyssa didn’t know about the fears that had lurked in dark corners of my mind for years, but especially since becoming pregnant for a second time. She knew only snippets of my childhood, of a life saddled with inferiority and feelings of “not being good enough,” feelings that sprang in part from having a severely autistic younger brother. She didn’t know that I had wondered for years what the risk was for having a child of my own with the condition, and when I imagined the possibility, as with most people, my insides froze. She didn’t know, but God of course had something to say. God wanted to get a message across…a hint of reassurance for the storms ahead, because as the verse says, the storms will come. No matter what the situation – illness, separation, disability, loss – the storms will come.

For me today, I am living a Job-like situation, struggling to remember that Job did nothing wrong to deserve what happened to him, and that in the end, he received more reward than he could have dreamed. But Job feared came upon him.

My greatest fear has come to me. What will I do with it?

Ethan was always a quiet baby. He was always sleepier, less alert, and grumpier than his older sister, who was the first child, the midwife marveled, who had smiled at her at birth. He was all of those things, but not excessively slow. He reached all of his milestones in the normal range. He was late to smile but did smile. He didn’t babble back at me that much, but some.

There were little signs and you have to know it’s not that I was in denial. But it was so hard to figure out reality when I knew how often my fears had colored my perception of life. I am a natural worrier and worst-case scenario type. Throughout Ethan’s first year, I would wake in the night sometimes, paralyzed by fear. What if?? What if?? I know it wasn’t God trying to send me a message. Some would say Satan, tormenting me. Or my own thoughts. Maybe it was a bit of both. This is the part, looking back, that is so hard to understand now. Was there a chance God was gently trying to tell me something, but I was ignoring it and then getting myself all worked up with fear? But I know God’s best is not to live the way I was living. I think many worriers, and especially hypochondriacs, use the fear and worry as a way to protect or buffer themselves from surprise. There’s actually this subconscious idea that floats around: if I fear it, it WON’T happen to me. As I’m typing, a revelation is coming to me. My entire life I’ve been a worrier. My dad is a worrier, my grandmother worried to her grave. I’ve conditioned my life to worry as a way of convincing myself that I’m in control and that my worries can prevent things from happening. Maybe the only way to overcome that, is to worry and worry and still have what I fear happen to me. It sort of breaks the power of that thought process, doesn’t it?? Which would have been better – to worry for a year and a half, losing sleep, feeling tormented, and then get a diagnosis, or to enjoy life, laugh with my kids, get plenty of rest, and then get a diagnosis? The answer is easy.

Yes, so I see now the lies I’ve always told myself. And that helps me see that there is even more meaning to this than I understand right now. This situation with Ethan can transform my life in many ways…and may even transform the way I think, expect, and fear (or choose not to fear). I can’t help but feel grateful for that.

More next time.

Starting Point

Before I go to the beginning, I will start with now. Now is scary if I don’t choose to believe the truth. By truth I mean the ultimate truth, not the truth seen in the world around me, what doctors tell me, what my feelings tell me, but what God says about me, my family, love, and even suffering.

They tell me my little boy has autism. Or at least, a “working diagnosis” of autism. The “working diagnosis” part comes because he didn’t have a full-blown evaluation, because he’s only 22 months old, and they want to see how he progresses after a year of therapy. But in the books, it’s autism.

This happened 10 days ago. If not for my faith, my family, and my friends, I’d probably spend much time crumpled on the floor, trying to fix the hole in my heart, howling from the sheer pain of it, crying tears that offer no solace. Thank God I am not alone. I have done some of those things, because I am human, but I am not alone and I am not without hope.

If I go online I am bombarded with everyone pontificating about what works and doesn’t and why you must choose THIS way or THIS diet because look! My child was cured! And of course my heart aches to find just the right cure because I don’t want to deal with this, I want to just push this away under a rug, just make it dissipate, like smoke. But there is no way to find the right method for my child without some trial and error, and there is no way to know how much it will help until we try.

This is where faith comes in. Faith, which has never been my strong point. One of my favorite verses is in Mark when Jesus says, “Don’t be afraid. Just believe.” I think just choosing that as a favorite verse is an act of faith, because I am far from embracing the awesome simplicity. Don’t fear. Just believe and trust God that everything will be okay. Isn’t that what life really boils down to?

And so we are going to start some therapies and one of the main ones will be “Floortime.” Floortime is what they call a more “naturalistic approach,” which scares me a bit. When I think of naturalistic I envision, for some reason, the people diagnosed with cancer who go for alternative, holistic therapies rather than pumping their bodies full of chemotherapy drugs. To me, the chemo of autism is ABA therapy -- applied behavioral analysis. I call it chemo because it's the strictest, most intensive of the therapies, with the most research backing up the results. I’d love to explain ABA but still can’t quite figure out what it is, other than it having something to do with cause and effect, breaking every desired action into tiny steps, and reinforcing behavior. All I can think of is Pavlov’s dog.

I like the philosophy of Floortime because basically you’re approaching children at their level, especially to start. You are helping them to want to react and engage with you rather than teaching them rote actions. I see it almost like our relationship with God. How much does He treasures our spending time with Him not as a habit or forced obligation but because we genuinely love Him and want to? Not only that, but I can almost compare it to God's relationship to us. He meets us where we're at. He loves us even before we change and become all we can be or should be; before we reach our potential.

In Floortime, you join in with what the child is doing to draw him out. You encourage the child to “open and close circles of communication,” which is the back and forth that comes from regular interaction with others: facial expressions, gesturing, eventually exchanging words and ideas. The Floortime idea is part of a larger model for treating autism spectrum disorders (ASD) developed by Dr. Stanley Greenspan. While there is a wide range on this spectrum, Greenspan's (and much other) research has found that all children with ASD to some extent have trouble with eye contact, imitating gestures, and joint attention (using eye contact and gestures to show and direct the people around you). The premise of Floortime is that very early on, something in the child’s biological makeup caused these interactions to become unpleasant for the child – I believe a lot of it has to do with the child’s sensory intake, how they are perceiving the world around them – and they begin to withdraw because it doesn’t bring the same pleasure as it would to another child. Maybe noises are too loud, lights are too bright. Wires are being crossed at different places in the brain. I am hoping and praying that as we start with Ethan young, we can do some rewiring and help him along.

I know Ethan has potential. Every mother says this, and you know what? It’s true. Even if your child is in a wheelchair, needing constant care, they have potential to change a life. As my mom said recently, they have the potential to bring out God’s unconditional love in all of us. And what greater gift could you receive? But what’s painful is the rest of the world not seeing that potential. We live in a drab physical reality where people stress out if their child gets a B or doesn’t get to play on the soccer team. People, including Christians, aren’t often living in a spiritual state of mind.

So he has the potential that every child has, but I also mean I KNOW he has the potential to learn. And I want so desperately to harness that. I will give an example:
I’ve started to read the Floortime “Bible” to find out ways to start the play therapy with Ethan now. Much of the therapy is family-centered and meant to be practiced anytime, anywhere. So it’s crucial for family to be on board, especially since we learn better when we make emotional connections, and Ethan’s connections, as stunted as they might be, are obviously much greater with his caregivers and sister. In the book they gave some advice about using whatever the child’s interested in to get them to engage, and also to use the imagination (which is another rough area for kids on the autism spectrum).

SO, I decided to use cheerios and Elmo, both of which Ethan loves. I thought I’d show him about fast and slow and up and down using the cheerios on his tray while he was eating. So I started moving them very fast, then very slow across his try, and up and down, saying the words while I did it. He began laughing and looking at me, wanting to do it again. That was yesterday. Today he started picking up the cheerios, or even raisins, and doing the same actions himself, without me reminding him. He remembered, and he was imitating and action he had learned. I was grinning from ear to ear.

As for Elmo, Ethan has an annoying talking Elmo, but I encourage play with it because it’s a toy he’ll bring to me to make it go. We’ll have some back and forth interactions around irritating Elmo. Yesterday I decided to turn Elmo off for awhile so we could play pretend with him. We pushed him around in a toy shopping cart, gave him pretend food, tucked him in for a nap, etc. I offered Elmo a drink, and a few minutes later, Ethan did the same. Today we took out Elmo again and I began asking him if he wanted food. Ethan offered Elmo his cheese and drink, without me modeling first. This was the first time Ethan had accomplished the “Can pretend to feed a doll” milestone listed in those “What to Expect” books. BUT, this was the best part: Ethan had grapes, and I asked if he wanted to give Elmo a grape. So he did, and then I asked if he would give mommy a grape. I opened my mouth for him and he put it in.

Sheer joy! You see, Ethan is 22 months old but has never given me food when I ask. You know that cute sharing kids do when they’re eating goldfish and mom asks, “Can I have one?” and they take their pudgy little fingers and put one in your hand and mouth? Ethan wouldn’t do that, but he made a new connection, carrying it over from the previous day and from Elmo to mom, and I was so proud. These are the types of examples I hope to see more of from Floortime. They keep me motivated and focused, and I am praying for more of them.