Simsek Strikes

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:

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!

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 Four: Dr. Martha Herbert on Autism, Genetics, and Environmental Toxicity

The following is the concluding segment from a lecture Dr. Herbert gave at a conference in Maine.  Her lecture, entitled "Genes and Environment, Developmental and Chronic:  An Inclusive Approach to Autism Science" was eye-opening to say the least, and is well-worth watching for anyone interested in the inter-connectivity of autism, genetics, and environmental toxicity.  Her closing should be a call to awareness and action for all of us:

 

Will Women Lead the Environmental Health Movement?

How can we imagine that ordinary people might be able successfully to challenge the overwhelming internal logic of the global economic system because of concern over environmental health?

 There is an Ethiopian proverb that when spider webs unite they can tie up a lion.  The lion of the globally destructive patterns of production and consumption may one day be ensnared and ultimately domesticated by the gossamer webs of human consciousness and community action.  What will happen when ordinary people, whose lives are often mortally wounded by the destruction of the biosphere, come to understand that their wounds are so often intimately related to the wounds of the earth?

 What will happen when a working woman comes to the realization that her own breast cancer, her husband's lymphoma, her brother's melanoma, her son's learning disability, his best friend's attention deficit disorder, her daughter's endometriosis, her niece's cleft palate, her cousin's chronic anxiety and panic disorder, her best friend's severe chemical sensitivity, her best friend's daughter's asthma, her uncle's infertility, her neighbor's son's testicular cancer, and her sister's daughter's childhood leukemia may form a pattern?

What will happen when this working woman begins to understand that these new human pandemics that effect her community and her family directly may be profoundly connected to what is happening to the fish in the sea, the birds in the sky, and the animals of the earth?  I believe this working woman will understand that the cancers and infertilities of the fish, the disappearance of the frogs, the cleft palates of the mice, the shifts in gender orientations of the birds, the susceptibility to viruses and infections of the seals, the disappearance of the song birds--that all of this and much, much more may be telling us a story that is also our story.  

 The story that the birds and the fish and the mice are telling us is the story of inter-being;  the story that all life and earth is truly, breath-takingly, concretely connected right now, and that what we do to the mice of the field, and the birds of the sky, and the creatures of the forrest is also, ultimately, what we do to ourselves and to our families right now.  

 I do not believe that we can hide from this story much longer.  It is one of the great stories of our time.  The very human protest against the massive, entrenched, and toxic system of global production and consumption may seem unrealistic economically and politically, but is it any less realistic than the Quaker protests in Europe and the United States that played such a key role in ending the 350 year-old slave trade?  I do not invoke the parallel to ending the slave trade lightly, for we are as enchained by toxic chemicals, and by ozone depletion, by climate change and the destruction of nature as we once were enchained by slavery.  I believe that environmental health may be one of the greatest human rights issues of the new millennium, and thus our biggest challenge.

 

(Please forgive any slight discrepancies in my transcription - I did my best but I'm no professional!)

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.

Autism Awareness: Face Value Continued

My friend Ronke always sends me the most amazing information.  She is brilliant and thoughtful and I honestly don't know how she finds the time to do research for me, but she does and she never fails to find something new and incredible for me to learn.  So, in response to my post about Lexi's issues recognizing faces, she sent me a link to this video.  It is lengthy, but in essence it is a lecture given at Yale about studies being done to learn more about the way autistic brains process facial information in comparisson to neurotypical brains. As Ronke explained in her message:

There's this really cool documentary that talks about how there is a region in the brain specialized for face recognition (the fusiform face area), and another that we use just for objects. It says that people with autism do not have activity in the face recognition region, but rely on the "object" recognition region when discriminating faces. Because the object recognition is not specialized for face recognition, they have to work much harder to recognize faces. I couldn't find it online, but this guy's stuff was referenced.

If you are at all interested in the topic, it is fascinating...

Now, there is very little uninterrupted time in my day, so I've been stealing minutes here and there to listen to this.  And when I was only about half way through, I found myself riding alone in the car with Lexi and wondering how, if at all, she was coming along with her attempts to pay more attention to faces.  Does she notice more now?  Does she differentiate between features from one person to the next?  So I asked her, and she said that she's trying to look at faces more at home, when she remembers.  She's said that she's "too excited" when we're out places to remember to look at the faces around her because her "brain can only think about one thing at a time and then it's thinking about the exciting things."  

So I asked her what things she's noticing about the faces in her family. For example, what things were different about Mommy and Daddy's faces?  I figured that this was an easy place to start since Paulo and I look nothing alike.  She thought for a moment and then said that Paulo's eyes were brown and mine were hazel.  I asked her what else she noticed, and she went to the hair, so I redirected her.  What about our faces were different?  How were our noses different, or our mouths?  She didn't know.  They looked the same to her, she said. In fact, she couldn't come up with any other differences in our faces besides the hair and eye color.

Next I asked her about her friends, and she was quick to assure me that she was getting better with them.  I asked her speciaifcally about two little girls she likes to play with (we'll call them S and B).  Both girls are about the same height and size.  They both have blond hair and blue eyes, so how can she tell them apart?  "Oh, that's easy!" she explained, "I know S's voice is different!"  But when asked if she could tell them apart if they stood side-by-side and didn't speak she wasn't so confident.  "That would be tough," she conceded.

So our next project may be a face book for her. I'm going to try to collect pictures of all the friends and family we interact with and print them as 8x11s to put into a book.  Hopefully, we can use this book to help her compare features, recognize the differences in people's faces, and boost her ability to "name that friend" even if they're not in their usual context.  I'll try to let you know what we learn!

Autism Awareness, Part Two : Face Value

It was the realization that Lexi couldn't recognize people's faces that finally led us to have her tested for Aspergers.  There should have been other indicators we noticed first, like the fact that she prefered to be left alone as a baby, or the three-hour-long meltdowns she had at three, or the vomitting-at-will, or the sensory reactions to hairdriers, vacuums, hand-blowers in public restrooms, tags in her clothes, or certain smells that made her cry.  Maybe we should have known something was up when she turned her back on all the people in the room to flip through a pile of books, one page at a time, for an hour or more.  At age one. What?  We thought she was just super smart!

Or maybe it should have been the way she couldn't tell her friends or teachers apart.  

Yeah, in spite of all the other stuff, it was that last part that would eventually get us.  We'd thought it was just absent-mindedness.   Maybe she was just REALLY bad with names?  But after Ellie's diagnosis (and the thousands of pages of questions I'd had to answer) it became pretty clear that something was up with Lexi, too.  From all my reading, I felt pretty certain it was Aspergers, but I wasn't sure if there was a point in having her tested for a while.  She was happy, she had friends, and we were managing the sensory stuff.  So maybe we'd keep going?

But then, almost by accident, I discovered that it wasn't just names.  She didn't look at faces.  She couldn't tell one face from another but was identifying people by other clues:  hair color and style, height, body shape, location.  It wasn't a very good system, but it was better than nothing.  Because she really didn't know how to tell one face from the next.  

So it was off to testing and yes, it was Asperger's Sydrome, thank-you-very-much.

That means a whole lot of things, but let's just start with the face thing.  Not looking at faces much means not recognizing facial expressions, either.  Are you happy?  Sad?  Worried? Curious? Angry?  Don't expect Lexi to figure it out without being told (or being clued in some other way), because she won't. But there's more to it, too.  If you don't watch other people's faces, chances are you don't think much about what you're doing with your own face.  And that means that Lexi's face doesn't try to mimic what it sees all that much.  In fact, she's often not aware of what signals her face is sending at all.  

Case in point:  this is Lexi's "I'm having the best time EVER!!" face.  Seriously.  When you take me off this horse I'm going to scream like you're dismembering me.

Knowing this, I thought I'd try a little experiment one day at lunch.  I'd ask each of the older kids to make a face showing a certain emotion, take pictures, and compare.  As expected, I could figure out what Spencer was showing me every time. Lexi was just as sure that she was making completely different expressions each time. And while she does have a variety of smiles, I'm pretty sure I couldn't identify the expressions without the labels. Could you?  (Oh, and please forgive the food faces:  they were eating pizza at the time when I quizzed them.)

Autism Awareness: Part One

April is Autism Awareness month and, with two kids on the spectrum, we have definitely become more aware of autism in the past several years.  Like learning more about almost anything, it didn't take long for me to realize how little I actually knew.  And as we've lived with the diagnosis it's become clear that most of the people we encounter are just as clueless as we were. 

Recently a friend's child was also diagnosed.  I spoke with her after the evaluation and I remembered acutely my own feelings after Ellie was diagnosed:  like I was suddenly walking around underwater. Nothing had changed--I was still me, and Ellie was still the same little girl she was before the Big A was attached to her -- but everything was different.  It was hard to breath.  To talk to people.  To say the words in my head, never mind out-loud to others:  Ellie has Autism.  Ellie is autistic.  I had to roll it around on my tongue over and over and over.  Get used to the taste and feel of it - sharp and bitter, shapeless and yet pointed.

I thought I was ready to hear what they had to say, but in my heart I wasn't. I was still in denial.  And no matter how gently they tried to deliver the blow, it couldn't help but knock me off my feet. Because I thought Autism was something else.  I thought that Ellie couldn't be autistic because she was so happy. She couldn't be autistic because she was so attached to me and so content to be held and cuddled. She couldn't be autistic because she seemed so normal (whatever that means.)  Because she was so smart, and so good at some things. Because she laughed hysterically when her siblings chased each other around the house and climbed her father to be tossed in the air. She was so strong, so physical, so intense.  She was just too focused on other things to bother speaking.  She was just too busy playing to pay attention when I called her.  She just flapped her arms like that because she was excited.  She was just independent.  Right?  All I saw was a sweet, happy little girl and the things I didn't see?  Well, I just didn't see them until someone pointed them out to me. 

What I should have seen were the things that were missing and the things that were off.  I should have noticed that she didn't wave. I should have noticed that she didn't point with her finger to show me things.  I should have noticed that not only didn't she talk, but she didn't understand, either.  She didn't follow directions.  She made eye contact with me but not most other people.  She didn't acknowledge people who came to the house.  She didn't care about kids her age.  She didn't usually look at my face to share an experience or to see how I was reacting.  She didn't smile at ladies in the supermarket when they talked to her.  In fact, she usually ignored them.  She often treated me like an instrument - she would put my hand on things she wanted opened, use my finger to point to things she wanted named, pull me to a problem she wanted solved so that I could figure it out for her, use my hand to draw pictures, letters, or numbers on her Magnadoodle. She preferred to watch balls roll or the spinning wheels on her toy train than to play pretend. She didn't mimic or imitate the things we did. She never asked for a drink or a snack or a toy - she just cried and let me figure it out. I should have seen these things as red flags, but I didn't.

And as I began to really see it all it suddenly seemed so obvious that I couldn't believe no one had told me earlier!  I couldn't believe I hadn't seen it myself, except that I had been so afraid of the A word.  I had seen the videos, the specials, and read the articles.  My heart had broken over and over for these parents whose children retreated into themselves and became distant enigmas.  All those blank, staring faces and silent voices, or the rocking bodies and shrieking lungs:  all I knew of Autism was this, and it was terrifying.  

Only that is not the only face of Autism.  This is Autism, too.  This happy girl who sings me awake in the morning is autistic.  This girl who loves animals and snuggling and tickle-fests?  The one who sits at the table each night smiling at her family and calling us by name, trying to tell us about her favorite episode of The Wonder Pets or a song at school? This girl who is teaching herself to read, who loves to paint and sing, who pulls my face to hers for long kisses and tickles me if she thinks I'm sad?  And then there's her sister with Asperger's who can charm you to bits and probably teach you something, too. This, too, is Autism, and it looks nothing like what we thought.

We are lucky.  Autism can go either way.  But because it can be so many things, because it has so many faces, we need to spread real awareness. When I tell you my daughters are autistic and you are surprised, look again.  Think again.  Look at their lovely faces, listen to their voices, watch them move, and add them to your inventory of what Autism looks like to you.  It does not always look like you imagined, and it is all around you.   

Griping in a Winter Wonderland

I love New England, truly I do.  I love the crusty, feisty, independent people.  I love the history (ok, except the whole Puritan thing....and the witch trials...and the treatment of Native Americans...need I go on?) I love the architecture: Colonials and Victorians and old rambling farms with wrap-around porches, and Queen Anns, and coastal mansions topped with widow's walks.  I love the rocky, cankerous coastline, the bustling rivers and the lush and looming mountains, and the clear, cold lakes.  I love the moose and the deer and the flocks of wild turkeys that wander through the neighborhood. I love the wet defiance of spring and the blinding brilliance of fall.  I even love the way that the muggy summer days can melt into deliciously cool, fragrant nights, and the way the bats play around our house at twilight.  I do. I love New England.

But I hate winter.  Really.  First, there's the cold. I hate being cold.  Every morning I climb out from under my pile of blankets and shiver a little.  The house isn't any colder than other seasons, exactly, but the floor is.  My feet are.  I have learned to love my scratchy homemade woolen socks.  I pull them on and drag myself downstairs for hot coffee, counting down the time until I do battle with my morning shower.

Because it is a battle.  

When they built this house they did a lot of things right.  It's sturdy and comfortable and bright, for example.  It's warm, and the water is heated directly from the furnace so that the tap can be scaldingly hot at times.  Unfortunately, the furnace can't seem to manage to keep the shower water hot. No, not even close.  I have resorted to all sorts of tactics to try to ensure 10 minutes of hot water each morning.  I have tried to time my showers carefully 5 to 10 minutes after Paulo's so that the furnace would have a chance to get really fired up first.  I have tried turning up the upstairs heat 10 minutes before showertime to heat the pipes.  I have tried leaving the heat up while showering.  I have tried turning off all the heat in the house so that the furnace only heated the shower water.

No dice.

No matter what I try, it seems that I cannot influence the temperature of my shower.  Some days, I win. On those blissful mornings my water is piping hot and I can wake up in its sweet embrace, emerging toasty and warm and ready to tackle the day. Like a superstitious baseball player I try to figure out what I did right (red pajamas? coffee first? heat up then down? how long since last shower? what time to the minute?)  But other mornings I am tortured instead.  It starts hot and then fizzles two minutes in. Maybe it drops down to tepid, and I have to curse quietly and simply rush.  Other days it falls to downright cold and I have no choice but to take what my father calls "Military Showers".  Turn the water on.  Get wet.  Turn it off.  Wash entire body.  Turn it on and rinse.  Turn off.  Shampoo. Turn it on.  Rinse hair.   Skip shaving and conditioner because I am too-freaking-cold-to-stand-it.  Get out and shiver in towel to warm up.  Try to drown the grumpies in a second (or third) cup of hot coffee.  

Then there's the other wonder of winter: the joy of snow.  I don't like snow, in general.  I don't ski or snowboard or skate, so it's pretty much wasted on me. This year there's been the weekly blizzard which moves in every Tuesday, dumps roughly a foot of snow, cancels school for Wednesday and buries the whole place. I'm not sure what I hate most about the snow:  the way it messes up the roads, the way it messes up the schedule, or the way it keeps us locked inside like cranky prison inmates.  Oh, wait, I know:  it's the snow clothes I hate the most.  No, not just the fact that it takes about 30minutes to get three little kids into all the gear they need to wear to play outside for 10 minutes.  You know all about that already.  

It's actually the way that Ellie's decided to be allergic to, freak out at the sight of, boycott mittens.  

At first I thought it was just that she couldn't keep them on, so I pinned them to her sleeves.  She was still mad about them.  I figured that snow could still get in around the cuffs, so I sewed big, long water-proof sleeves to the ends of her mittens and pulled those suckers up to her shoulders.  I thought I was pretty smart with that one!  I got her suited up with the fancy up-graded mittens and took her out into the snow.  Two minutes into it she was crying again and waving her arms around like one of those inflatable wind-sock men you see at the used car dealership, and the more she waved, the longer her arms got as the mittens-with-sleeves slipped further and further out of her snowsuit.  Great.  But I was determined to teach the kids how to make a snow fort, or at least a snow man, so I persisted.

Aaarggggg!!! 

The next snow day, I tried pinning the mitten-sleeves up.  Still mad.  Maybe it was the no-thumbs thing? Today I tried getting her thumbs in the thumb holes and pinning the mittens to the jacket cuffs. Nothing doing.  

Now she screams at the idea of mittens.  She will pull her whole arm out of the sleeve and snake it out of her coat at the neckline to avoid mittens.  I'm pretty sure that this is a sensory thing for her, but this is New England in February.  There's about 10 feet of snow on the ground and it's 5 degrees in the sun.  You can't NOT wear mittens.  It's just not an option.  So we're stuck going back inside. And undressing kids for another 20 minutes, not including the time it takes to clean up the snow they tracked in and dry the soaking wet snow clothes.  Good times.

Really, Mom, I hate these things. 

Honestly, the only thing I think I like about winter is snowblowing.  Yes, I said snowblowing.  I love that. It gets me out of the house, and it's so peaceful.  Sure, the engine is deafening and the snow can be blinding.  My nose might be freezing and running at the same time, and my hands could be cramping. The snowblower weighs half a ton and sometimes the self-propelling part is a joke.  But no one yells my name every two minutes and I can see my progress.  It's satisfying to watch that plume of flying snow, see the clear, clean lines left behind, and to watch the wall of snow left by the plow slowly disappear, one pass at a time.  Did I mention that it gets me out of the house?  It might be the best thing about winter.  Well, that and a good glass of port on a cold night.

The children might not agree.

 

Some snow.

We like it, Mom!  Why don't you come out?

Ok, this is starting to get a little ridiculous.  There are chairs under there.

 

Here's hoping we don't have to open that door until the spring.

I don't know where we're going to put the rest of the snow.  Seriously.  This bank is significantly taller than I am now.  Please, Mr. Plowdriver, have mercy.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Maybe we should consider trading in one of the cars for a good, strong draft horse and a large sleigh.  Or a dog team.