Simsek Strikes

Full Circle

Last summer, our neighbor found and brought to us three fat, black swallowtail butterfly caterpillars that were enthusiastically eating the carrot greens in her garden.  While they ate everything we offered and shortly encased themselves in three, perfect cocoons, what followed was a gruesome and unlikely learning experience which left us hoping against hope that we might still hatch a butterfly in the spring.

Ignored in their windowsill home for the long winter months, once the days started to get warmer and the first flowers of spring started to bloom, the kids' attention returned to the remaining chrysalises. Would we have a butterfly soon?  Was there a chance there was a survivor?  We carefully opened the butterfly house and removed the branches to examine the well-camouflaged cocoons, and when we did, we discovered something encouraging:  only one of the three cocoons had been breached!  The nasty carnivorous flies had only invaded one of our caterpillars! We might still have two butterflies in stasis.  

We rushed back to the internet to see if we could determine when we might expect them to emerge, only to face more discouragement.  Apparently, wintering chrysalises in stasis was trickier than just letting them stay unmolested inside.  They might have been better off in the cold garage, or being misted occasionally inside the refridgerator.  In fact, the artificial light and heat in the dining room might have dehydrated them beyond repair.  And truthfully, they looked a little dry compared to the pictures we saw online of healthy cocoons.

Sad, but unwilling to give up, Spencer insisted that we keep them "just in case," and I couldn't say no. So we transferred the branches to a large, open-mouthed jar, loosely covered the top with a butterfly net, and left it in the window.  Of course, the net was removed several times by one or another curious kid and, rather convinced that there was no life within, I was less-than-conscientious about re-covering the jar.

This week, as the weather settled into the most perfect string of spring days - warm, sunny, dry and breezy - all three kids (and their mother) came down with a head cold that meant business.  Yellow snot began dripping, running, and spraying everywhere, and voices grew whiny, scratchy, and irritable. School came to a full halt for everyone, replaced with countless lessons in better nose-blowing techniques (use a tissue PLEASE, Ellie!) and appropriate tissue disposal (not in a pile on the couch, not scattered on the floor, not piled on the table beside you etc...)  The TV got a work-out as the older two sprawled in front of it's flickering face, covered in blankets, flanked by boxes of Puffs Plus and stuffed animals.  And Ellie, never content to be still even when sick, patrolled the different rooms lugging books, crayons, animals, her iPad, and anything else that caught her eye.

So it was that this afternoon found her camped out in the diningroom, drawing on the whiteboard and reading an assortment of transported books while Spencer and I watched Rango on Netflix. Suddenly, she stopped singing and called out "It's a BEAUTIFUL BUTTERFLY!  It's a BEAUTIFUL BUTTERFLY!"  Unsure whether she was reading "The Very Hungry Caterpillar" or looking out the window, I came in to investigate.  

"Where is the butterfly, Ellie?  Show Mommy."

"Right THERE!"  she said with glee, pointing at the front window.  

It only took a second to realize that she wasn't looking at a butterfly outside, but one right there on the inside of the glass.  While no one was looking, one gorgeous black swallowtail butterfly had emerged from its cocoon and was fluttering drying wings against the glass.  

The picture can't do justice to the deep, velvety color of his wings.

The empty cocoon

In moments everyone was crowded around the window as I tried to coax it away from the window and into something we could use to bring it safely outside.  Little fingers had to be reminded again and again not to touch the fragile legs and beautiful wings, all while ooohing and aahing over his velvety colors and perfectly curled proboscis.  There was much joy at the realization that Daddy was working from home, and with a little patience on their part, he could partake in the release.

Even his body was pretty, lined with bright, white spots
 

Soon we were bringing him to the back porch and bidding him a fond farewell.  In spite of the long, strange winter, the confusion of the window and the glass, he quickly fluttered his perfect wings and soared into the sky.  In moments he had reachd the roof of the house, the tops of the trees, and then open sky for the first time.  It was an amazing and beautiful thing. 

He was out of the bowl before I could even snap a picture.

 

That bird-like shape is actually our butterfly!

higher...

and away he goes! 

We actually got our own little miracle today.  And who knows?  Maybe we will have the pleasure of releasing a second butterfly soon...

 

Sooooo Blessed

 

There are things that are not just things to me:  things that are loaded with memories, or feelings. Things that are saturated with meaning, both personal and profound.  There are tattered books whose pages smell of my childhood and whose words ring out in my father's voice whenever they're read. There are knick-nacks from high school, college and beyond that hold parts of my former selves - memories of people and places far away and yet close to my heart.  And there are things from my more recent past, too, like the beautiful, crocheted bedspreads and doilies that Paulo's Madrinha made for us with so much love and such matchless skill before age and illness stole her memories and her voice. There are the tiny Christmas bows that adorned the "Christmas fern" Paulo and I decorated on our first Christmas together, reminders of those early moments when our future was just beginning. And there are tiny sweaters and embroidered bibs that once fit around my children's infant selves, now so impossibly small and fragile against their giant and growing bodies.  These things are more monuments to the hurried passage of time than simple things at all.

 

Two years ago Ellie was newly diagnosed, and we spent the fall taking her to her first autism program in Nashua each day.  The people were lovely and gentle with us, but it was a hard adjustment.  Before the Christmas break, they planned a party for her 'class'.  We would miss the party itself as she found the filled classroom too overwhelming, but there were goodies and trinkets to take home.  In fact, they prepared by helping the children make ornaments while we, the parents, sat in a training seminar to learn how to be our children's therapists at home.  Ellie often hated these separations, as she could not yet communicate with others and being away from me often prompted panic.  After the hour-long seminar I often returned to find her in tears, which made the exercise doubly hard.  After the ornament-making class, she was once again in tears. When I picked her up they cheerfully handed me the paper snowflake pictured above, painstakingly cut out and decorated by the staff with "Ellie" printed clearly on the back.  I don't know if she even helped to spread the glitter, but I rather doubt it.

 

The juxtaposition between this and the ornaments my other little ones had made at 2 was almost too painful at the time.  I found myself almost repelled by it and everything it represented:  an open-ended question about where this sweet child's future lay, and how many Christmases before she might be able to make even a rudimentary drawing for herself.  I knew the gesture was intended to be sweet, but in truth it tasted bitter - a stand-in for what my daughter couldn't do.  I almost threw it out.  Almost.

 

Two years later it hangs on my tree.  I can still feel those feelings when I see it, but they are tempered by time.  Now it hangs quietly while the little girl who couldn't spread glitter on it's face two years ago recites from one of her favorite books in the next room, her sweet voice ringing out the lines with confidence: "My mother is a Dall sheep and she loves me sooooooo much!"  Lexi's voice layers with Ellie's as she reads to her brother, and Spencer, who couldn't sit still long enough to listen last year, sits next to her in rapt attention, laughing at the funny parts.  The blue snowflake is a humbling reminder of how wonderfully far we've come.

 

This year we are sick with colds and the house looks like a bomb went off.  Legos litter the diningroom table and the floor, and blankets and stuffed animals have been trailed around the house and left in odd places.  Books lie open on the couches and end tables, and the coffee table has been completely obscured by a mountian of animal figures.  Tissue boxes abound and presents still need wrapping.  Our Christmas cards hit the mail without letters or even notes, and our annual peppermint-bark batches are coming down to the wire.  With a little luck they'll all be packaged in time.  And in spite of the chaos, the sickness, and the busyness, I am feeling tremendously blessed.  Each trial and struggle and fear has silvered the edges of my hair, wrinkled my face, and darkened the circles under my eyes, but when I look at my life, my family, and my friends I can feel nothing but joy.  Who has been given more than I have?  None of this would fit beneath a tree, and yet it is all I could ask for and more. 

 

My name is Leah, and I am soooo blessed.  

 

I hope that your holiday is filled with warmth and love and blessings, too, and that the new year brings you all the gifts you need.  

(PS sorry about the ridiculous spacing.  TypePad is messing with me for Christmas!)

A Little Christmas Miracle

If you know Ellie, you probably know how much she loves to sing.  It's a bit like living in musical some days, where everything reminds her of a song and she just has to sing.  She would feel right at home in The Sound of Music, I think.  No, she doesn't always know all the words, and no, she doesn't always sing loudly.  It's often quiet and somwhat indestinct, but for the girl who couldn't sing a thing or speak a word not so long ago, every song is a wonderful thing.

My Favorite Things
The Sound of Music — MOVIECLIPS.com

She sings preschool favorites, songs she's heard in movies or on Sesame Street, songs they sing at school, songs she hears in the car, and, all year 'round, Christmas songs.  Her little voice has become the soundtrack to most of our days.  

In spite of all the singing we hear, she has been extremely shy about singing on camera or when asked. Several times I have tried to get her to sing a specific song for someone, or to sing almost anything on camera, and she refuses.  She's more apt to stare mutely or run away than she is to comply,  so I've settled for soaking it up real-time and leaving the recording until she's ready.

But, miracle of miracles, she obliged her teachers at school last week.  So here, to spread a little Christmas love, is Ellie's quiet rendition of Rudolph:

Letting Go

In September our neighbor brought us three caterpillars.  They were beautiful, fat things, with bright stripes and hungry mouths.  With great excitement, the children and I pulled out the little butterfly house and made them a home.  We stocked their new home with carrot greens (their favorite) and collected sticks to climb and build cocoons on.  We learned that they were black swallowtails and what they would look like when they emerged in the spring. We thought we knew what to expect.

So we were not surprised when they climbed high and spun perfect, camouflaged cocoons on their branches. We checked this stage off our list.

But expectation can be a dangerous thing.  

A few weeks later, Lexi noticed two flies inside the butterfly house.  Sealed inside, it was clear that they had not snuck into the butterfly sanctuary overnight. We had some more reading to do.  Suddenly, instead of learning about the life of butterflies-to-be, we were learning about these parasitic flies and how they came to be. In fact, they had been there all the time, silently, invisibly incubating inside their caterpillar hosts.  After eating all but the heads of our caterpillar friends, they emerged, leaving behind hollow cocoons.  There were great, fat, disappointed tears on Lexi's cheeks as reality dawned.  Instead of lovely, delicate butterflies, we had raised two carnivorous flies.  Not the lesson we had expected.

Life is messy.  Maybe it is our need for order and predicability that allows us to pretend otherwise, again and again:  to pretend that we have some control over our corner of this vast, uncontrollable universe.  I am no different.  I want to make sense and order out of chaos.  Something I can wrap my head around and hold indefinitely. Against all evidence to the contrary, my mind still craves some illusion of control.

It is this desire I struggle with the most.  If peace comes in the absence of desire, it is this singluar desire that stands most formidably in my way.  Uncertainty was so much easier to bear, somehow, when I wasn't responsible for other little humans.  If life's curves hit me alone it was acceptable.  I knew I could withstand my own heartache, injury, fear, illness.  But the saying is true:  once you have children your heart stands up and walks outside your body. And suddenly the uncertainties are so much weightier.  

I want to enclose them in my arms and hands and keep them safe.  I want to defy the chaos for them. I want to build a barrier around each of them studded with hope and prayer and love that can somehow repel unexpected dangers and protect them from harm.  As though some how any of us can move through this life without hardship and obstacles. As if growth happens without adversity. And yet I still want this for them: to control the uncontrollable.

When the October snowstorm hit this year, I sent them to bed with misgivings.  Upstairs seemed so vulnerable when the trees around us were bowing low to the storm, bending, and breaking.  We moved them to the front of the house at first.  And then, at midnight when the big oak in the back yard let go, we moved them into the basement.  They slept peacefully, and woke with surprise to find themselves relocated and the world around them whitewashed with snow and rumbling with the sounds of the generator.  Paulo and I slept fitfully, him with an ear to the door, me with an ear to the dull thuds and reverberations of trees still being crippled in the snow.  I wrapped my arms around Ellie's warm little body, listened, and tried to let go.

This is all we can do, really.  Love and let go. The love part comes easy.  It ambushes me from the crook of a little arm, from the space between small teeth, from behind twinkling brown eyes, from the booming laugh of the man who carries this with me, taking my breath away.  But each day I have to remind myself to find ways to let go.  To do what I can to tame the chaos, and then to accept the rest. To see each moment as it is, instead of what I expect it to be.  To be in this present moment instead of straining so hard to see and shape the next.

The sun over the frost is beautiful this morning.  It's casting small, straight rainbows through the beveled glass onto the dining room wall for the children to catch.  We are warm and everyone is well. Our bellies are full and the house smells of fresh coffee and clean laundry. The kids are laughing together over Legos and later family will come to eat with us.

Maybe next week someone will come to remove the rest of the debris from the storm and the fear that knotted in my stomach that night will be just another story to tell.  And in the spring we might still see a black swallowtail butterfly. After all, one cocoon remains unscathed and inside we can hope, maybe even expect, a butterfly is forming.   

Playing Doctor

There are a lot of things I took for granted before becoming a mother.  It's natural to make assumptions, I suppose.  The sheer number of things that didn't occur to me back then would be shocking if it weren't for the fact that I think they are a common denominator for most parents.  The reality of parenthood is so starkly different than the idea that it's laughable, in both wonderful and challenging ways.  And, I think, this is how humanity continues to rush head-long into reproduction.  It's a biologically programmed blindness, akin to the way we can (sort-of) forget 24 hours of intense mind-bending natural childbirth and choose to do it again a couple years later.

One of the many things that didn't occur to me was the fact that I would be so crushingly responsible for all the healthcare decisions for each little person who came into my care.  Now, before you say "Duh!" let me explain:  yes, of course I knew that would be caring for them, taking them to the doctor's, nursing them through illnesses, and so on.  But when I thought about these things, I imagined it in fairly straight-forward terms.  I would take care of the colds and flus and stomach bugs, and the rest would be managed by my trusted pediatrician.  All I had to do was pay attention, follow directions, and remember all my first aid training in case I ever needed to, you know, apply pressure and elevate a wound or something.  

But it didn't take long for me to realize that things weren't going to be that simple.  Those trusted doctors, even at their best, missed things.  They got things wrong.  They couldn't explain why Lexi had bloody stools as a newborn--not even the GI "Specialist" in Boston or the Allergy and Lactation Specialist I travelled 45 minutes each way to visit.  I had to figure it out myself. They thought it was "no big deal" when the DTaP made her scream for 3 hours straight, spike a fever, and caused her leg to go red hot and swell up like an italian sausage on the grill.  They missed her delayed speech and lack of interest in faces.  They dismissed Spencer's Celiac Disease as "toddler diarrhea" and never noticed the fact that Lexi was practically blind in her left eye.  They shrugged off Ellie's wordlessness since "your kids are just late talkers" and seemed surprised when I informed them that she was, in fact, autistic.  I could go on, but you get the idea.  These are not bad, insensitive, careless doctors (although I have a few choice words for the Boston GI). They try hard, but they miss things.  They can't help it.  They're busy and they only have a few minutes with my child.  They're not trained to recognize everything, and I'm sure that they see so many parents complaining of phantom illnesses that they get a little dismissive. And so, it falls to me to figure it out. (And don't get me started on the things they've missed for Paulo!  Those oversights make me think I should have been a diagnostician!)

And the decision-making is a weighty responsibility.  It would have been so much easier to let them make all the decisions, and yet I might have 2 undiagnosed, untreated autistic children (or more if Spencer had been damaged while his gut was leaking), one half-blind daughter, and all three malnourished.  Might these issues have been caught eventually?  Perhaps, but not early enough to have made the kind of progress we have by catching them young. Not early enough to prevent a lot of damage in those first, formative years.

And so now I take nothing at face value.  I question and research every medication and each procedure. I push back, and I worry.  I'd rather not have to worry, but I can't help it.  

The night before Spencer had his tonsils and adenoids out this week I sat by his bed and listened to his laboured breathing and prayed that I was making the right decision.  I was planning to take him into his first surgery, first general anesthesia, first bodily invasion. He was excited and positive, which was good. There was a good chance that having the once-routine procedure would help him finally breath and sleep soundly for the first time in his life, with no gasping for breath, sweating, waking with nightmares.  It could improve the ADHD symptoms and strengthen his system.  It could help to ensure that he didn't have another 6 months of ear infections this year.   Even if it did a couple of these things, it would be worth it, assuming that there were no complications.  Beacuse it could also be dangerous. There could be severe bleeding.  He could react unexpectedly to the anesthesia, or the codeine, or develop an infection that would require antibiotics, and our choices there have been drastically reduced by his reaction to augmentin in the spring.  This would be routine for the doctor, but it wasn't routine for me, or for Spencer.  It was a calculated roll of the dice.

And so it is with each decision.  They cannot do it for themselves, and the doctors' track records aren't great.  They try hard.  They do their best.  I haven't given up on working with them, but I have accepted that they are incerdibly fallible, and at the end of the day I have to decide what chances are worth taking.  I have to push back, ask for more tests when something isn't right, and sometimes say "no" when I feel something isn't safe enough or goes too far.

I'm pretty sure that about half the grey hairs I'm sporting came from carrying the weight of these decisions.  I wasn't trained for this, and I know that if I screw up, and I do, they may pay the price. 

I kiss their little sleeping heads each night and I pray hard that I can keep them safe.  That I can see what I need to see.  That I have the courage to trust my gut and the wisdom to use my head.  That I don't make any terrible mistakes.  But most of all, that they stay healthy and unharmed because there are just no guarantees. 

So far, so good!

Making History Stick

In some ways, summer is behind us already.  Last week Spencer and Lexi began school again in earnest, and I must admit that I ventured into this new year with no small amount of trepidation.  Afterall, until now I have only had Lexi at home and, while that seemed daunting enough that first year, it was much like tutoring.  I taught, she learned, and the year rolled along pretty smoothly.  Ok, there were plenty of bumps, but still, we had managed and I had started to get the hang of Lexi's learning style:  highly verbal, easily engaged by discussion and questioning, adept at memorizing all things except math facts, and prone to grand emotional swings.  Got it.

Spencer, on the other hand, couldn't be more different.  At his comprehensive developmental evaluation earlier this summer (where they told me that he is highly intelligent, ADHD-NOS, and struggles with language recall, usage, and organization) the kindly doctors who evaluated him all expressed their relief that he was to be home-schooled for one stark reason:  Spencer should be taught one-on-one in a structured, quiet environment.  Oh, and he's a visual learner and may struggle with the language and writing portions of his education.  No, they didn't have any good advice for where to get help or services for the language-based challenges. (And yes, we are still looking.)

In the mean time, I needed to find a way to teach this very bright but very distractable, language-challenged child a first-grade curriculum in a way that would keep him engaged and help him to progress successfully....while also building a third grade curriculum for my very bright, hyper-focused and super-verbal daughter which would accomplish the same thing.  Super.

As school approached I was starting to lose some sleep over school.  It seems normal for home schooling moms to occasionally second-guess themselves and their choices for education.  Wait.  I think that's a parenting plight in general, but I digress.  I had questioned myself and my abilities as a teacher before now, but suddenly I was gripped by fear.  I am not a professional!  I don't have the training for this!  I'm not even the most structured or detailed person on the planet!  Heck, I have been known to space on a therapy session for Ellie, forget important business phone calls, and make a trip downstairs to retrieve a new roll of paper towels three times before actually retrieving it.  I may have made a horrible, horrible mistake.  

And yet, when I imagined Spencer in a public school class with 20 or 30 other kids I shuddered. Physically shuddered.  Because  I saw him struggle in a class with only 8 other students.  I saw him so distracted and lost in the chaos that he began to act-out.  And I know that the doctors were right about the kind of environment he needs to learn.

So week one arrived.  Ready or not, it was time to learn!  My mom heroically voluneetered to help out for those first dicey days as we all got our sea-legs, and with her help we dove in.   And as expected, there were some ups and downs. The first day, after I had done everything I could think of to make things exciting and dynamic, Spencer informed me that "school is boring."  Ouch.  And then, on the fourth day, in the middle of a lesson, that same boy leaned over and told me "I love home school with you, Mom!" Win!  And so it went.  Some things worked.  Others failed miserably.  We adjusted and adjusted again.  But by the end of the week, my newest student had made two things clear:  1) he loved Science and wanted to do it every day and 2) he hated History.  There was too much "story" in history, apparently.

So this week, as we approached History again, I decided to take a different tack.  This time, we would do History early in the day while he was still fresh.  I would go slower, act more out, and look for the places that he was lighting up--and there we would go, whatever direction that was.  

Apparently, the thing that excited him about hunter-gatherer societies was the hunting.  Spear hunting, to be exact.  While I had visions of trying to build a hut or fashioning a fishing trap of some sort, Spencer wanted a spear.  So, as soon as the rest of the day's work was done, we headed into the yard with a tree limber and a pocket knife, and we made spears.  We talked about how straight and how strong it would have to be, and how we might cut and sharpen it if we were hunters and gatherers without pocket knives. We talked about the dangers of getting close enough to a big, wild animal to stab it with a spear, and what it would probably do when you did stab it. And yes, we made two spears because Lexi wanted in on the pointy-stick action.  Finally, we set about making a target to practice spear hunting.  And my boy who can't be bothered to color things in?  He painted it all himself.

Who knew that a pointy stick and a target were all that was necessary to make History exciting?  The two little barbarians proceded to run headlong, yelling their gutteral, hunting yells, across the yard to jab their spears into the cardboard target again and again.  In no time, our target was peppered with holes, the center nearly perforated to oblivian, and two kids were grinning and panting with joy.

"Hey, Spencer,"  I asked.  "Do you still hate History?"

"I LOVE HISTORY!" he cried, and you know, I think he meant it. 

As Summer Races By

I'm not sure why I keep expecting things to slow down soon.  It must be wishful thinking, or else pure fantasy on my part.  Perhaps it is a subconscieous motivator, the kind I used to give myself at 4:30 in the morning when insomnia had kept me up all night and I was facing the next day on no sleep:  If you can just make it through the morning, you can nap in the car at lunch...just make it through the morning...I knew it wasn't true, that I'd never do it, but I told myself I could because it made getting up feel less overwhelming.  And somehow it always worked:  it gave me a light at the end of the tunnel, even if it was an imaginary one.  So maybe imagining a life (just around the corner) where the pace of my days is routine, leisurely, and predicable makes racing through my actual days a little easier.  Maybe.

Either way, here we are in August, only a week before the older two start school again, and I haven't posted a thing.  No pictures from our week at camp, no stories about Ellie's new therapy or summer school or all the talking she's doing, no shots of Lexi's toothless grin, no funny quotes from my perpetually quotable girl, no stories about Spencer's developmental evaluation (ADHD-NOS and some unidentifiable language processing/organizing/retrieval issues),  up-coming tonsilectomy, or quick quips, no stories about visits with friends and family, or trips to the beach, or even Ellie's birthday. Let's face it, I've really dropped the ball and there's no earthly way I'm going to catch up on it all.   

So I've opted to post a few stolen moments in pictures and move on. Because it still hasn't slowed down and this might be the best I can do!

Ellie, the book worm, earned an award at school

Lexi went toothless:  four gone at once makes biting a challenge!

loons at camp

the boats

Ellie chilling on the dog's bed with an iPod

Spencer flew off the float

and Lexi learned to jump without help

all five went in the canoe...

...one out cold.

a friendly butterfly

a swim

more swimming

and the little snapper we saw last year is back and a little bigger.

Uh-oh,

Ellie (AKA Dangerous Girl) learned some new new, unwelcome tricks!

Avo lit the candles,

we all sang the song,

Ellie (almost) blew them out,

and turned four with flair.

Spencer's Encounter with Antibiotic-Induced Serum Sickness

May was a heck of a month for Spencer.  I suppose that the trouble actually started back in February when he got an ear infection for the first time since toddlerhood.  It took two rounds of antibiotics to clear up that infection, but the fluid never really drained.  So at the end of April when he got a cold, his ears were almost immediately infected again.  A trip to the doctor confirmed that his right eardrum was cherry-red and bulging and the left one was also bright red, although not bulging as much.

It should be mentioned here that we have been in the process of trying to get Spencer evaluated for Auditory Processing Disorder.  After trying to figure out for quite some time why he struggles with language, syntax, following directions at an age-appropriate level etc I began to test what he was actually understanding.  He is bright and has developed great coping mechanisms, but it is obvious that there is still much that he misses in conversation, especially when there is other noise or activity around him.  His Occupational Therapist has noticed the same sorts of things, noting in her most recent evaluation that Spencer only responds to his name 3 out of 7 times in a quiet room and failed to respond to his name 3 out of 3 times when there was other activity around him.  Yes, even though he loves everything he does with Miss Linda he fails to respond to his name.  I could go on about this, but I will save it for another post.  For now, suffice it to say that we really need his ears healthy for the evaluation.

Given the circumstances, we did not want to let the infection go until the drum burst - scar tissue would help no one.  So the doctor prescribed Augmentin, an antibiotic he has had in the past, and we headed home.

One week after starting the Augmentin, as he was heading up to bed, Spencer complained that his knees hurt.  This is not unheard of for Spencer:  he has been known to complain of aching legs in bed at night, but by the time he wakes in the morning he's just fine.  So we sent him to bed with a kiss and settled in for the night.

Shortly after midnight, Paulo woke me.  Spencer had been with him, awake, for over an hour and he had bumps on the back of his neck.  I checked, and sure enough he appeared to have some hives along his collar line.  I slathered on some Benadryl cream, wondering if he was reacting to the laundry detergent, and went back to bed.  Half an hour later he was no better, so we gave him some oral Benadryl and he finally passed out from fatigue.

In the morning, things got alarming.  He hobbled downstairs, covered from head-to-toe in hives.  He could barely walk, complaining that his knees really hurt, and they did appear swollen.  He had no appetite and was miserable.  Suspecting an allergic reaction to the antibiotic, I took his temperature and called the pediatrician.

A couple of hours later, after a thorough examination, we were told that he was having what they called a "serum sickness reaction."  Later reading told me that when this type of reaction occurs to a medication as opposed to a vaccination they call it serum-sickness like reaction, but the results were the same.  It was rare, they said, but not unheard of.  Apparently, the autoimmune system turns on itself and sets off a cascade of symptoms throughout the body.  Hives, joint pain, edema (swelling), nausea, diarrhea, and sometimes more serious complications such as encephalopathy (brain swelling) or renal failure (liver failure) have been known to occur.  For now, we were to keep him on ibuprofen and Benadryl around the clock and alert them immediately if he began to have any GI symptoms such as vomiting, diarrhea or bloody urine or stools.  Also, we were to return the next day to reassess, and these reactions tend to get worse before they get better and they wanted to keep a close eye on him.

So we carried him home.  By this time, he couldn't walk for the pain in his knees and ankles.  His ankles and feet were beginning to swell, and he itched everywhere.  He was miserable and there was little we could do for him.  We kept up the Benadryl and ibuprofen around the clock, waking him when necessary, but he continued to get worse.  He needed to be carried anywhere he needed to go, and dressing him or putting him on the toilet were torturous because of the joint pain.  His hands and feet were cartoons, so swollen and painful so that he couldn’t use them. 

At night he couldn’t sleep for more than 45 minutes at a time, sometimes less as the pain in his hands and feet would seize him and he would stiffen, practically levitating off the bed in pain.  The itching was so intense that it was painful, too, and he began sleeping with an ice pack so that we could ice the worst of itches on his hands and feet throughout the night.

As a parent it was torture, too.  I spent a long time kneeling by his bed, soothing him, praying for him, keeping vigil because it was all I could do.  I couldn’t make it better and I couldn’t tell him how long before he’d feel better, either.  Even the doctors didn’t know how long it might take.

The next morning, we returned to the doctor.  They took a urine sample and updated his condition in their records.  That afternoon, they called me to inform me that while there was no blood in the sample (a good thing) there was sugar there and they wanted him to come in to give a second sample to confirm that it was appearing because of the extreme stress he was experiencing.  They also wanted some blood work done.

The tests came back fairly normal.  His inflammation numbers were high, obviously, but there wasn’t sugar present this time and no signs of other kidney or liver involvement.  They had sent in a referral to an allergist (who called same-day to schedule an appointment), a referral to the osteopath to try to adjust him to clear the fluid from his ears, and recommended that we then follow up with an ENT (ear-nose-throat specialist).

But the suffering continued.  The doctor’s office called and checked in once, sometimes twice a day.  After 2 or 3 days he began to sleep longer stretches, but it was over a week before he could start walking some without pain, and the pain would continue to come in waves for the next 6 weeks.  The hives, too, continued to come and go for several weeks, meaning that even when he was able to return to school he had to travel with ice packs.

Hives more than three weeks after the onset of the reaction.

 
 Hives in the beginning of June.  The bathroom lighting makes them a bit harder to see.

When it had been over a month, we got word back from the rheumatologist that his doctor had consulted.  Because he had run a fever for several days, and because of the extreme swelling and joint pain, he wanted to test for Lyme, arthritis, and Kowasaki’s Disease, too.  This news came on the heels of his appointment with the allergist, who had also taken blood to run tests because the hives would be took misleading for the skin scratch test, and had recommended that we enroll him in a sleep study to check for apnea.  The blood test was to take place the next day, and then an echocardiogram was scheduled to check his heart for aneurysms to rule out Kowasaki’s Disease.

Needless to say, Spencer was less-than-thrilled at the idea of another blood test, but to his great credit, he managed it wonderfully.  This time, Paulo was home and able to come with us and the two of them made a great team.  In fact, Spencer was so proud of how well he’d done that he asked when he could have another blood test done because “I’m good at it, now!” 

His inflammation numbers were still up but the blood tests showed no indication of Lyme or arthritis, thank God.  And one week later the echocardiogram came back clean, too.

No one can tell us why this happened to Spencer, or how likely it might be for him to have this type of reaction to another known trigger such as the cephalosporin family of antibiotics, the tetanus vaccine, or rabies vaccine.  No one could say whether this tendency runs in families and whether or not the girls might run a higher risk for this type of reaction in their lifetimes.  No one could say whether or not people with other autoimmune issues, such as Celiac Disease, are more prone to atypical immune reactions like this.  All they could tell me is that it is autoimmune in nature, very unusual, impossible to stop medically, and poorly understood by all.  Great.

Needless to say, we’re playing it safe from here on out.  Spencer’s sporting a fancy new Medic Alert bracelet and I’ve considered tattooing his arm with the words “If you touch me with penicillin my mother will kill you,” just to make sure no one screws up.

It’s June now, and he hasn’t complained of joint pain for over a week.  He’s running and playing again, and only scratching mosquito bites instead of hives.  It’s such a relief to have him back to his old self that I could cry.  And finally, after months of waiting, he had the first of at least two evaluations for auditory processing done last week.  The fluid levels in his ears, if still present, weren’t enough to interfere, and he did really well working with the doc throughout his evaluation.  This was a baseline evaluation which told us little that we didn’t already know:  namely that he’s bright, happy, squirmy, and that further evaluation of his working memory, language processing, and language organization needs to be done.  They’re also sending me a detailed survey to fill out concerning distractibility, activity levels, and impulsivity.  Next appointment will be next month, and I’m hoping that we’ll know more then.

 

Running With the Big Dogs

Every morning during the week is mayhem.  There's all the waking and motivating and packing that any family with young children experiences, and often one or more grumpy face complaining about breakfast/bed making/tooth-brushing, and "why do we have to go to school today anyway" is a common refrain.  But go we do, and once they're all packed into their seats in the car things tend to smooth out. Ellie listens to Raffi and sometimes even sings along, and the other two wait patiently for it to be their turn for music.

Our first stop is at the local elementary school where Ellie is enrolled in developmental preschool. They've graciously offered to meet us a little early at the doors so that I can get Spencer to his school *almost* on-time afterwards.  As we arrive, there are often other special needs kids arriving, too. Some come with their parents, their communication books in hand, sticker charts and schedules waiting for them to complete the obstacle course that is getting to school each day.  Others arrive in groups on the "special" busses and are ushered in by a veritable platoon of teachers and aides.  And for all of us, some days are better than others.

As we were waiting for Ellie's teachers today, we watched two teachers escort an older autistic girl from the bus.  This was clearly a bad day.  The girl was seven or eight, I'd guess, but she was screaming and jelly-kneed like a toddler who doesn't want to be picked-up.  The two teachers, one on each side, were holding her upright and trying to coax her to walk towards the school doors.  She jerked and thrashed every so often, trying to get out of their grasp while plugging both ears with her fingers.  I could only imagine the amount of effort it was taking to move her forward through all this, but they were quietly talking and coaxing as they inched towards the entry.

Once inside, she buckled to the floor and the teachers let her be for a minute as they shook it off and tried to settle her.  But she was in that other place--that place an autistic person can disappear in when the tantrum takes over.  It's a place beyond reason, and I have no doubt that it was a long process before they got her to her classroom.  Even after Ellie had kissed me good-bye and trotted off to class with her teacher, the older girl was still in the entryway, now seated in a chair and flanked by teachers while she screamed, eyes squeezed shut and ears plugged, trying to blot out the world.

Six hours later I was standing by the back door of the school waiting for Ellie’s class to be dismissed when the door opened a little early, and a teacher waved pointedly at one of the special busses.  As the bus moved forward to park closer to the doors, a second teacher came forward with the same girl.  She was screaming –still?  again? – and this time the teacher held her upright from behind, arms under the girl’s armpits, hands clasped in front for security as the girl alternately thrashed and went limp.   Again, the process was slow and the girl’s fingers never left her ears as she shrieked and cried.  Her cries continued and for a few minutes intensified as the two climbed into the waiting bus.

A moment later another little girl came out, this one holding her teacher’s hand and looking slightly alarmed as they moved towards the screaming bus.  “It’s ok,” the teacher was saying to the second girl, “Sarah* is sad and we’re going to go see if we can make her smile, okay?  Would you like to help Sarah smile?”  The little girl didn’t answer but she nodded a little and the rest of their conversation was lost to me as they moved away.

As Ellie’s smiling little face pressed up against the glass doors, backpack trailing behind her, I felt such a mixture of joy and sadness at once:  such joy in the amazing little girl I’ve been blessed with, and such sadness for the torment of the other little girl for whom the movements of daily life were so excruciating.  Such sadness for that other mother and father somewhere whose baby suffered so in spite of the hard work and gentle hands of so many people. 

It’s easy sometimes to wonder why we’ve been given the challenges we’ve been given, but once in a while I am reminded of just how much harder life could be.  In truth, we are the lucky ones and it isn’t fair, or just, or reasonable.  No child should live through any day as that girl lived through today, and no parent should have to face that kind of pain on their child’s face without the hope or promise of relief.  I felt the guilt of one spared for no reason, of a survivor in a war that is taking children wholesale.  My children have received glancing blows, but their outlook is good.  For some, tomorrow holds much less promise.  

There but for the grace of God go any one of our children.

I scooped up Ellie and smothered her giggling face with kisses, thrilling to the sound of her little voice saying my name and pointing at the car to go home.  “She made it to the last 3 in musical chairs with the big kids today,” her teacher told me proudly.  “Right, Ellie, girl?  You’re running with the big dogs now!”

She surely is.

*Not really the little girl’s name, of course.

 

Autism Awareness - Part Three: The Down Side of the Up-Lifting

When I bacame an Autism Parent (because, let's face it, that's what happens when your beloved off spring is diagnosed) I chose not to be secretive about the whole affair.  As hard as it was to get my head and heart around this new reality, once I was able to regain some semblance of emotional stability I decided that we had some social obligation to help other people understand autism a little better.  So I told family and friends.  I told acquaintences who often saw Ellie and strangers who tried to engage her when we were out and about.  I answered questions and I did my best not to be defensive or thin-skinned about the whole thing.  

And as word got out, supportive people began sending me inspirational stories, emails, and videos about autistic kids and adults.  There was the artistic teen in Florida, the Autistic Prom King, the Basketball Star and many more, and they are wonderful, amazing stories of success.  At first, I saw them as beacons of hope that my own children could follow:  there was no limit to their potential.  This was a really good thing in some ways, because once you get a diagnosis no one can tell you what to expect.  No matter who I asked, no one could tell me if Ellie would ever be verbal, what her limitations might be, whether or not she'd be able to go to college, get a job, become independant.  They could tell me that they thought that she was smart, and they thought she had a good chance of catching up in some ways, but no more than that. So at first these stories really did inspire me not to lose hope:  to see that there was great potential for happiness and independance in her future.

But since those early days I have begun to see a down side to all this cheer.  Because while these kids' stories are amazing, they paint a picture too rosie to reflect reality for many families.  And that's dangerous, because as cities and states and the federal government are all looking for places to cut their budgets and tighten their belts, we can't afford to have that picture shape the conversation about services for special needs.  Already families in most states do not have access to the funds necessary to provide essential services to autistic children and their families and if law-makers and Joe Public believe that autism isn't that big a deal because of the basketball-playing wonder boy they saw on YouTube, many more children and families are going to suffer. 

Because autism treatment isn't a luxury, it's a necessity, and yet the cost of paying for it out-of-pocket is prohibitive for all but the wealthy.  The rest of us who planned as best we could for our children's futures but couldn't have predicted that those plans would include ABA therapies, speech therapies, Occupational therapies, Social Skills therapy and so on are left at the whims of state-funded programs. And the funding there is already pitiful and erratic.  Funds very from city to city, town to town, state to state.  Many states do not require insurence companies to cover even basic autism therapies such as ABA.  Often people are forced to move to other states to get necessary services, take out exorbitant, crushing personal loans, mortgage the rest of their lives in order to, as one mom I know said, "ransom" their children.  Because the alternative is to leave the fate of their child to chance in the hope that they'll somehow make it in a system that too-often sees special needs children as disposable. (And before some of my good conservative friends start emailing me about "private charities" I should mention that I have yet to find any charitable autism therapy organizations, outside of a couple in the UK and Canada and New Zealand.)

When Ellie was diagnosed, our area agency had resorted to trying to train parents to be therapists because there wasn't enough money to provide the ABA necessary to the 2 and 3 year olds being diagnosed with autism.  In spite of the fact that trained, professional therapists typically don't treat their own children because the whole parent-thing gets in the way, the agency could see no alternative because their funds had been cut so severely that they could no-longer afford to hire ABA therapists to provide the intensive therapy necessary to help. What happened to families with two working parents who couldn't attend the daily classes? What happened to children whose parents were too overwhelmed, too busy, or couldn't get the hang of therapy?  I don't know.  I do know we moved heaven and earth to get there, calling in the whole extended family so that I could get in with Ellie every day because it wasn't much, but it was all there was.  And I know that even for me, with all the support of my family and a great desire to do whatever it took, therapy with me was less effective than with a professional. It couldn't help but be.  Moreover, I know that I was lucky because Ellie's symptoms were so much milder than those of many of her "classmates."

And now?  Even that paltry funding that provided basic training for parents is in danger.  And the lives of other little Ellies being diagnosed today, and the lives of children whose challenges are much more profound than Ellie's, hang in the balance.  With good early supports and services, and intensive speech and behavioral therapies many more of them could become functioning, productive adults.  But without them, many more will be dependant on others forever.

So the next time you see an inspirational autism video or read an amazing article about someone with autism who overcame great odds and found success and happiness in life, by all means cheer for them, because it is wonderful and amazing. But remember that there are thousands of others, invisbile in these stories, just trying to learn to speak, to use a toilet, to make eye-contact, or to overcome myriad challenges enough to do the things most children do naturally.  And they and their families need all the help they can get if they're to have any hope for a brighter future.