Simsek Strikes

In Which We Get the Swine Flu and Ellie Speaks

As most of you reading this know by now, it was Ellie's lack of language as she approached the two-year mark that prompted me to get her tested.  And those tests, beginning in June and culminating in October's diagnosis of Autism, that resulted in the series of daily and weekly therapies that keep us so busy.

This week, thanks to the arrival of the flu in the house, Ellie has had neither speech not occupational therapy even once.  Instead, ever since Spencer's first symptoms appeared almost a week ago, we have been quarantined here waiting to be well enough to re-enter society. 

A brief word on the H1N1 virus, as this would appear to be what we've had:  not the end of the world.  Seriously.  It may be that our overall health was good to begin with--we all take our vitamins and we're careful about our diets-- but although it has been miserable and prolonged (Spencer still had a slight fever yesterday, five days after the appearance of his first symptom), it has not been a frightening illness in any way.  There was some vomiting for Spencer, but I've seen worse in your average stomach bug, and that segment was over in 24 hours.  There have been fevers, but they respond well to Motrin and we've been able to keep them down to 103 or less.  There has been a lot of fatigue, muscle aches, headaches, stomach aches, sore throats, congestion and general misery, but again--nothing frightening.  For what it's worth, we've treated with regular doses of Motrin, multivitamins, and larger doses of vitamin D3:  1000iu daily for Lexi and Spencer, and 5000iu daily for Paulo and myself.  And strangely enough, I have yet to get sick.  I'm still waiting for the other shoe to drop.  It would be just my luck to get this thing as soon as the rest of the family is healthy again!

In any event, we've been stuck at home and I have been frustrated to miss all this therapy time.  I've been trying to steal moments here and there to work with Ellie on the skills we're supposed to be working on at school, but it isn't as long or intense as the time she spends either with the speech therapist or in school.  And there are almost always distractions.  So on the days when she has her bath without a sibling I've been trying to spend some extra time playing, labeling, and working on encouraging appropriate responses.  All the work at this age is based on play, anyway, so almost any place that you can control the play can work.

Tuesday night after dinner, we went upstairs for Ellie's bath as usual.  As usual, she made a beeline for the basket of toys and began to toss them into the tub, one at a time.  The bath filled and we finally added one naked toddler, babbling and splashing.  I was watching quietly when she decided surprise me by talking!  One at a time, she held up the toys we'd played with the night before and labeled them for me:  bus, train, car, dolphin, duck, ball, fish...The words weren't perfect, but they were deliberate attempts at the right sounds.  My jaw dropped.  She grinned, clearly pleased with herself.  Again and again, we came back to the toys--I'd point and ask her, and she's answer with the same sounds she' d made for each object before.  Tears sprang to my eyes.  It was the best gift she could have given me. I called to Paulo to come and see, but by the time he got up stairs she'd decided it was time to play a different game, and that was that.

Yesterday, Wednesday, she started to say "chip" and actually pulled me to the kitchen several times to stare at the bag of barbecue potato chips on the counter and say "chip".  And, at the end of the day she repeated her performance in the tub with the train and the bus.  I was overjoyed.

I am thrilled and hopeful that this could be the beginning of more meaningful language.  Paulo smiled knowingly at my surprise and wonder.  Having been a late talker himself, he's been convinced for a long time that she would start talking when she was three, like he did.  I want him to be right, and yet I am afraid to get too excited.  I have heard and read that sometimes these things come unexpectedly with ASD kids, and then leave just as quickly and mysteriously as they appeared.  I am praying, and crossing my fingers, and I just can't help hoping that this--this is the beginning we've been waiting for.

Halloween 2009 - Better Late Than Never!

The kids had two Halloweens this year:  one with Uncle Alec and Crystal, and one with Paulo's family.  Lexi and Spencer loved trick-or-treating: "Trick-or-treat!  I'm Lexi and I'm supposed to be a Fall Fairy!"  "And I'm BUZZ LIGHTYEAR!"  Ellie, on the other hand, was not so keen on the whole thing.  She did dress up for both events (plus a Halloween party at her school) but you'll notice that she did not go to anyone's door.  Maybe next year!

We'll be wading through the loot until Easter, but the pictures will last for years.  Here they are:  the Fall Fairy, Buzz Lightyear (from the Toy Story movies), and Princess Fiona (the ogre princess from Shrek), and family.

Memories of East Berlin and the Fall of the Wall - Has it really been 20 years?!

Twenty years ago this month I was living in Munich, Germany.  I can hardly believe that it's been twenty years--it makes me feel so old!  Because in many ways, my memories of those six months in Munich are clearer, more vibrant, more joyful than most of my other high school memories all together. 

One week before the Berlin Wall came down, my class took a field trip to Berlin for the week.  Most of the time was spent in West Berlin, naturally.  After living in Munich, I was less impressed by Berlin.  While Munich was clean, friendly, and safe, Berlin felt much like any other city--busy, dirty, impersonal in many ways.  We stayed in a youth hostel and dyed each other's hair with henna.  We gawked and the McDonald's on the corner (I don't remember any McDonald's in Munich) and got lost in the subway which, unlike Munich's U-Bahn but like every other subway I've ever visited, was dark, somewhat dirty, and smelled of hot metal and old urine.

As a class, we had permission to visit East Berlin for one day.  We gathered at the checkpoint where East German guards with machine guns checked our passports and issued us one-day travel visas.  Strangely, East German visas were not stamped into our passports directly, but onto small sheets of paper which were slipped between the pages of our passports to be collected by the guards on our way out.  We were also required to change 20 West Marks into East Marks, and we would not be allowed to keep it, or change any of it back on our return to the West.  There would be little evidence of our trip to bring home.

Once inside, it was like we had stepped through the looking glass into a city from the past.  A grey and dirty past. Our clothes and hair were conspicuous for their style, color, and flair amidst so much that was drab and worn.  The buildings were crumbling and dreary, and many structures that had been bombed during WWII still stood in ruins, their crumbling holes like gaps in a mouth full of rotten teeth.  We instinctively lowered our voices as though we were intruders in party dress who had found ourselves accidentally crashing a funeral.

We had all day to spend our money, but there was next-to-nothing to buy.  We tried some coffee, but it was bitter and impossible to finish.  Several people curiously bought East German cigarettes for the novelty of it, only to hack and spit furiously with the first puffs, shaking their heads in disgust. Most packs were given to hopeful-looking East Germans hanging on a corner eying us cautiously.  A couple were kept as souvenirs.   We toured a ceramics factory where I bought a single blue-and-white mug for my mom, mostly because it had some aesthetic appeal and the words "Made in East Germany" were printed on the bottom.  Little did I know the historic value those words would soon have!

We passed several parking lots full of the East German Trabants: cars we called "Trabis".  It was surreal to see lots full of a single kind of car, and streets lined with them, end-to-end in varies states of disrepair.  Many shops were closed, or only had a few items left on dusty shelves.  East Germans we passed on the street kept to themselves, speaking in low, hurried voices with strange, muted inflection.  There were no raucous, laughing groups of youngsters or kids on bikes, or street vendors or musicians.  It was unnaturally subdued and grim.

The day dampened all of our spirits.  It was oppressive just to have to stay for the afternoon.  After choking down a cardboard lunch, we huddled together to count our change.  Many of us still had too much left over, and nothing we wanted to buy.  One of my classmates noticed a few people sitting on the sidewalk outside the grocery.  They looked even more bedraggled than many we'd passed and several of us decided that we would offer then the change in our pockets--they certainly had more need of it than we did!

Their reaction was heartbreaking--such gratitude and honest surprise.  One woman had tears in her eyes.  My heart broke for them.  I couldn't imagine living in this dusty, hopeless twilight world.  A few hours had passed and yet, as soon as we passed back through the checkpoint into the West it was like walking back into the sun after spending the day in a dark theater.  We all found ourselves breathing easier, blinking as though we were just waking up, laughing again, shaking ourselves to get rid of that close, oppressive feeling.  But the taste of that afternoon stayed with us.  I can still taste it, bitter on my tongue, dry and crumbling like rotten plaster  and rusting metal and old dust.

A week later, back in Munich, we got the news that the Wall had fallen.  Friends called their families all over the world laughing and crying at once. Celebration and disbelief swept the city. Trabis rolled into town, and there were stories on the news of people burning them in celebration.  East Germans began to appear in Munich in little, hurrying knots.  They were as conspicuous on Munich's city streets in their drab, out-dated overcoats and bulging bags as we had been in East Berlin.  Their voices were still hushed and toneless, and the children gawked shyly at everything and everyone.  It was not just the end of an era, it was also the beginning of something new and overwhelming.  I was too young to appreciate the enormity of it all, but I have been forever grateful to have been there during those pivotal months. 

I still can't believe it's been twenty years, though. Twenty years--einen augenblick!

Note: For something a little lighter, check out this 1960's commercial for the East German cars that were so hated when I was there in 1989.  My German is rusty, but among other things, they claim that the car is maneuverable, fast, and tough--what a joke!

Where Have I Been?

I know.  It's been days and days and I haven't posted.  By now you should have cute pictures of children in Halloween costumes with sticky fingers and candy grins.  There should be an anecdote or two about our escapades and at least one funny utterance from Lexi or Spencer.  There should be at least one update about Ellie's school days and her most recent evaluation.  I've been meaning to write it all down, but I've fallen down on the job.

In truth, most days I've been too busy to write, or too tired, or both.  My time has been spent rushing from one obligation to the next, hustling children, packing and unpacking, checking lists, feeding hurried meals and prepping for the next thing.  Last week I was doing this with a head cold and less sleep than usual.  It left me no energy or interest for writing. This week Spencer's come down with the flu, and it looks likely that within then next 24 hours or so Lexi and Paulo will join him in misery.  I'm praying that Ellie and I can hold on to health a bit longer.  I can't afford to be sick again--not while everyone else is, anyway.

So there are pictures, but I don't have time to post them.  Ellie and I are the only two still awake now, at 8pm, and soon she will want to settle into a cuddle and some sleep, too.  Then I have some cleaning up to do before I can lie down, one ear open for the sounds of coughing, crying, or vomiting.  Tonight I'm just praying that the sick can sleep peacefully, and the healthy can stay well another day.

Perhaps, in a few days, I will be back with those pictures and a few laughs.  Tonight you have my apologies.  I hope that you are all well.  We'll be back soon!

Mommy's Payday

Yesterday was a blur.  Ellie had 'school' in the morning, the electrician was here for most of the day working to install our back-up generator, the generator itself was delivered, my mother was here, briefly, bringing Spencer home from preschool, I had to make meatballs in there somewhere, and go over Lexi's school work with her, I had a meeting with the program coordinator to discuss Ellie's transition and to establish new goals, and the older two had swimming lessons. Whew!  There was precious little time to sit, observe, breathe, or think.  But there was a moment--one that made smile, and even chuckle a bit in the rush.

While I was sitting in the diningroom with the program coordinator, Lexi and Spencer finished lunch and ran off to play in the other room.  In the relative quiet of the house, their voices were clear and we inadvertently found ourselves eavesdropping on their play while she jotted down notes.

Lexi:  What to you want to play, Spencer?

Spencer:  I know!  Let's play our animals are throwing up!

(This, for reasons I may never understand, is a favorite game)

Lexi:  OK!  And you can bring your favorite animals and I'll bring my dolls.

Spencer:  You can have some of my animals, too.

Lexi:  You want me to help your animals, too?  Because you love me?

Spencer: Yes! I love you bigger than the sun, Lessi!

Lexi:  I love you, too, Spencer.  I love you so much that I would give my heart away to you if I had to.  I love you that much, with my whole heart!

And in that moment I was reminded most powerfully why we parents DO all this.  It was Mommy's payday;  one of the moments make it all worthwhile.

Parent-2-Child Begins

Yesterday was Ellie's first day of what we are referring to as her "school".  In truth, it is the Parent-2-Child Early Intervention program designed to train parents to be their child's therapists, basically. 

First, a little history: This was not always the program in place here.  According to the lead therapist and coordinator, the area used to provide a full ABA program in-home.  Each child was assigned a therapist who would make home visits to work with the child in their own environment for 15 to 20 hours a week--the standard amount of time recommended to achieve improvement with ASD children.  But even as the numbers of children on the spectrum rose, the funding continued to be cut until the in-home hours were fewer than seven a week.  Progress was impossible to achieve this way and the agency was forced to look for alternatives. 

The Parent-2-Child Program was being developed in California to bring parents into the process and teach them how to play the role of their child's therapist.  So our local agency went to California and learned about the program as a possible alternative way to help the ballooning numbers of ASD children in need of early services and supports.  This is their second year of operation and they do feel that it is superior to the drastically cut ABA program that they had prior to the change, although I'm not sure that they feel it is as good as the 15 - 20 hours of in-home ABA offered initially.  

The techniques are not that difficult, so I don't believe that it is impossible to train many parents to do the job of the professionals.  But I expect that they do have some parents who are resistant or unable to get the hang of being as structured and controlled as they need to be to be effective.  I expect that for the children of those parents, the loss of a structured, therapist-led program cuts especially deep.  Then there is the fact that life for most of us does not provide enough uninterrupted time in the week to focus on working one-on-one with the child who needs it.  Therefore, instead of a series of uninterrupted, structured work sessions we are encouraged to "fit it in wherever possible" which, I expect, is less satisfactory as well.  At the very least, it means that all the children enrolled in the program are not offered the same chance at success.  The children whose parents have more time, more patience, a better ability to assimilate the tenants of the program into their daily lives, to organize and structure, and greater focus and dedication get the best chances. Meanwhile, children whose parents work fulltime, are too busy, or unorganized, unstructured, who have a hard time getting the gist of the program, or are just plain overwhelmed get shorted.  For the child, unfortunately, it's the luck of the draw.  For Ellie's sake, I hope that we are able to bring the right mix of time and structure to her program.  It won't be easy.

For her part, Ellie had a wonderful first day of school.  Every part of the hour and fifteen minutes is carefully structured and focused on parent and child interaction.  Ellie seemed immediately at-ease in the room and stayed engaged for the whole session.  We went to the second morning session, so there was only one other parent and child there, and several therapists and interns.  We worked through each station happily while Lexi worked on her seat work at a table set up just for her outside the classroom.  She made friends with some of the interns and women working there, and declared that Ellie's school was "great!"

As so it begins.  This week will be spent learning the routine and getting acquainted with the therapists and the facilities.  Next week we begin training in earnest.  Wish us luck!

Mileage

Today was the home visit from the Parent-2-Child program that we will begin on Monday.  This is the next step in Ellie's treatment, and before we began they wanted a lot of information about her; her communication skills, comprehension skills, and what makes her tick.  Since their approach (ABA) is behavioral in nature, they needed to have a good sense of what types of things motivate her. It was a lengthy interview and I won't bore you with the details.

During almost all of it, the girls played together in the basement, but towards the end they flitted and wandered upstairs.  Lexi wanted to let us know that Ellie had made a sound like something Diego had said on TV.  She danced around the kitchen while she told the story, eager to engage and entertain us.

A few minutes later, Ellie appeared, grinning.  She came bearing a little Lego trashcan she'd discovered downstairs.  I held up my index finger, and she fit the can over the end.  Then she took it off and did it again.  I tickled her with the can-covered finger and she giggled, and then she belly-laughed. Soon she was grinning and backing across the kitchen all the way to the living room, only to race back towards me, laughing.

I could see that she was charming our visitor.  

And I realized that Ellie's already teaching me.  I have this label in my head--Autism--and attached to that label are all these images--children who have stopped smiling and laughing, children who are detached, emotionally drifting in their own space like so many untethered balloons, floating away, unresponsive,  isolated.  I have read the stories and seen the pictures.  They have broken my heart from afar.  I have imagined myself in the shoes of those parents, reaching out for my child to be greeted by a blank stare, to be ignored or pushed away. To be unable to reach my baby.  Just the idea used to make a hot lump of fear and sadness well up in my chest.

But in those images there were no pictures of giggling toddlers, charming smiles and mischievous, twinkling eyes.  Yet here she is, proving to me just how little I know--how much I have to learn.  She flaps her hands and says little-to-nothing.  She has a strained relationship with sleep, and she doesn't respond to her name.  She has to be taught how to point and how to make eye contact at appropriate times.  And yet she's happy much of the time.  She thrills to airplanes in the sky, dogs and cats and scampering chipmunks. She loves music and hide-and-seek and running and being thrown in the air. She doesn't hug or kiss, but she melts into my arms so sweetly... she's not detached.  Sometimes she seems more like a little space alien than anything else, trying hard to comprehend the strange language around her, unable to figure out the culture, blind to the body language but captivated by the action just the same.  

As she climbed into my lap, grinned and stuck her fingers in my ears, I had to smile.  I have great hope for this one.  And I can get a lot of mileage out of hope.

The Things They Say: Lexi on Moses

Lexi was sitting on the couch reading aloud from the Children's Bible.  Every so often she hits an unfamiliar word and instead of sounding it out, she guesses.  The guesses can be comical.

"...and He told Moses to lead the Israelites out Egypt.  God said He would lead them to a new land called Ca..Can..Canada!"

Victories and Frustrations

Life has an interesting way of dishing out victories amidst frustrations, as though God were meting out just enough encouragement to keep me from tearing my hair out and giving up.

This week was long and painful.  I spent the first three days knocked down with a stomach bug.  The kids were healthy, but they were missing all the things that make life interesting for them because I couldn't leave the house to take them anywhere:  preschool, Taekwondo, swimming, and everything else was off the schedule for three days.  By mid-day Tuesday, just to pass the time, they had developed elaborate strategies for harassing each other into white-hot rages.  I was repeatedly dragging myself off the floor to respond to someone screaming like they'd lost an appendage or their hair had burst into flame, only to discover it was another "he/she-took-my-stuff, won't-let-me-play, knocked-over-my-thing etc" type of emergency.  It wasn't pretty. I resorted to movies on DVD.  Again and again.

Wednesday afternoon I began to feel a bit like a human being again.  I had lost 5lbs in three days, but I was off the floor and finally had enough energy to take them out of the house for a bike ride down the street.  It wasn't much, but it was an improvement.  Ellie thought that, since I was better, it would be a good night to stay awake for several hours.  Heaven forbid mommy get TOO energetic!

I stumbled into Thursday like a zombie in the sun--pale and disoriented and blinking dully--just hoping to survive the day.  Little did I know what gift awaited! 

Thursday afternoon, Ellie awoke early from her nap, cranky and uncooperative.  I tried to get some lunch into her before Speech Therapy, but she was not interested in nourishment that interfered with crying.  So I was less-than-hopeful about the kind of session we would have that day. 

For the first half of the session, I was impressed just to see her paying attention to tasks and cooperating.  She wasn't making any attempts at words, but she was signing some and participating nicely.  But she wasn't done.  Towards the end of the session, she chose a farm puzzle.  This exercise is typically about matching (she's very good at this), making choices between two pieces offered at a time by pointing (getting better at isolating her index finger to point), and joint attention, which means shifting her gaze between the objects and the face/eyes of the therapist.  Joint attention is hard for children with ASD, and and lack of joint attention is one of the big markers that a child is on the spectrum.  Ellie is improving at this, too, and was making better eye contact this time as well. 

But the big surprise came when the therapist offered her two pieces, a cow and a sheep, and asked her to pick the cow.  On the side, she asked me if Ellie ever did this and I responded that she didn't.  Whenever I ask her to show me something by pointing to the named object, she doesn't.  I don't know if she doesn't understand what I want or she doesn't want to play or she doesn't know what the word is.  "Where's your nose, Ellie?  Where's Dora?  Where's the ball?  Where's the doggie?"  Nothing.  She has never answered by pointing to the appropriate object.

"Pick the cow, Ellie!"  the therapist suggested.  Ellie looked for a moment, and reached for the cow.  I shrugged.  Coincidence. She placed the cow and the therapist offered two more, a dog and a horse.  "Pick the horse, Ellie!"  Ellie picked the horse.  In fact, she continued to pick the requested piece every time until the puzzle was complete.  I was shocked--laughing and cheering and flabbergasted.  The therapist was as surprised and delighted as I was. 

Still wondering if there was any chance it had been great luck instead of cognition, she offered Ellie a board book with big pictures and asked for her to point out three more objects.  She got all of them.  It was a tremendous victory, in the midst of a tough week.

Friday we all went to the fire department with Spencer's preschool class.  As usual on outings where she doesn't have unfettered freedom or has to wait for something, Ellie made the whole experience quite challenging. While the other children were climbing on the vehicles and listening to the fire fighters discuss gear and fire safety, Ellie cried.  She thrashed. She thrashed so much in the stroller I eventually felt compelled to get her out.  She ran away. She insisted on climbing on and off the bumper of one engine and shrieked if I touched her or tried to help her down.  She cried, shrieked, went limp and sat on the floor when I tried to pick her up, and went rigid in my arms so I had to put her over my shoulder.  Trying to keep her from disrupting the other children made it nearly impossible to keep tabs on Spencer and Lexi.   

At one point she found a puddle of water on the floor.  It was love.  She stomped and splashed.  She smiled. I sighed. She started squatting down to wet her hands, standing to wipe them on my pants, and then wetting them again, over and over.  Yes, her dress and shoes and tights were getting wet, not to mention my pants, but she wasn't crying or screaming or thrashing or running away.  Just as I was thinking that we'd found a way to keep her occupied, she decided to sit in the puddle.  This I couldn't allow (although it was warm in the closed truck bays where we were, it was 35 degrees outside and snowing lightly) and so the screaming started again.  As many sets of eyes, some curious, some probing, and some annoyed and accusing  fell on me and my screaming toddler again, I wanted to say "Yeah, I know, but guess what?? She picked the right puzzle piece every time this week! Every time!"

Finding Joy

So yes, there is the new challenge of Autism, but there is still joy to be found.  For a few days it was hard to remember that, but Ellie was eager to remind me. 

Hello, Mommy?  It's me, Ellie!  Over here!  Let's climb stuff!  Here, I'll climb on YOU and you tickle me...now lets go swing and look at the leaves.  Oooh, pretty--so many leaves are flying now!  Wheeeee....Check out this smile and hey, I'm this close to jumping with two feet! 

She's brought me back to the moment more times than I can count.  There are still swings to fly in, shockingly bright leaves to marvel at and collect, blustery fall winds to catch your breath, late gladiolas and tomatoes, tickles and cuddles and hot meatballs.  ("Hot" is Ellie's new word, added just yesterday.) There are three vibrant, energetic, enthusiastic kids to play with and the world's best husband to laugh with, curl up with, and love to pieces. (Happy Anniversary, my love!)

So, although I am currently knocked out with some evil stomach bug, I wanted to drag my sorry self over here and share a few snapshots of the fall joy.  True, these were taken over the weekend, not in my last 48 hours of misery, but still...joy. 

Where do you find your joy?