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:

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.

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.)