Wednesday, August 16, 2017

The Hits Just Keep Coming

Well, he did it again.

You don't really want to dignify his idiocy with any kind of acknowledgement but you can't let it go, either.

Our president stood at a podium, in the lobby of a building that carries his name in huge, gaudy gold letters, and called the people who marched in Charlottesville "fine people."

OK, OK - he only called some of them "fine people."  And that is his out - he left it there deliberately, in case you hadn't considered that.  He didn't call neo-Nazis and Klansmen and white supremacists "fine people," just the folks who are hell bent on protecting the monuments celebrating long dead white supremacists standing in the South.

Except that is exactly what the racists heard.  And he intended that, too.

All night and all morning Democrats have been blasting him and Republicans have been...  scolding, a little bit, sort of.  Quite frankly this is nearly as disgusting as what was said yesterday.  Many in GOP leadership have written pseudo-strong statements about how racism and bigotry are vile and cannot be tolerated, that there is no room for this in a civil American society.  (Again: there is no honor in calling racism vile and intolerable.) Those who possessed even the tiniest pair of gonads also said that the President must be unequivocal about this.  "It's time" they all kept saying.  "He must assume the moral leadership of the presidency."

Honestly.  Do they believe that he's confused?  Do they honestly believe that he doesn't know exactly what he is saying, how he is saying it, and to whom he is speaking?  He knows ALL of that.  If there is one thing this man is good at it is slick talk and verbal manipulation. He is saying exactly what he thinks he needs to say to rally his base - a base that, by the way, features neo-Nazis, the KKK and white nationalists of all stripes - the welfare of the country and millions of people who live in it be damned.

Do I know with absolute certainty that the president is a racist?  No.  Has he given me any reason to believe otherwise?  Also no.  And even if he isn't it doesn't matter - he is pandering to hate groups.  They are quite literally thanking him for his statements yesterday.  "The president told the truth," David Duke said.

This president is incapable of dwelling anywhere near the realm of "truth."

The fish rots from the head.  The head of the United States is rotten - putrid. He is a friend to men and women who wave Nazi flags, spew hatred against minorities and have left their white robes behind to hide in plain sight dressed in polo shirts and khaki pants.  They are celebrating him today.

Heil Trump!

Those pablum statements made by GOP leaders aren't wrong.  There is no room for equivocation right now.  The problem is that they are the ones who must be clear - their president has already made his ideology plain for all of us to see.  If they cannot, or will not, disavow his disgusting rhetoric then they are just as complicit as the bigoted cowards marching in Charlottesville.  If political power and ambition overrules human decency then they have aligned themselves, and identified themselves, as supporters of those "fine people" who spewed hate last weekend.  Sadly, I suspect I know where their allegiances will fall.

So it's up to us.  Will we allow this kind of so-called leadership to persist?

Sunday, August 13, 2017

A Cancer in Typical White America

Not sure what to say.

Lots of people are commenting today about what has happened in Charlottesville, VA.  I'm not sure I can add anything new to the conversation - no, actually, I'm sure I can't.  But I have also been feeling convicted by my silence, so...  no more.

I don't personally know of anyone who would say to my face that the white protesters in Virginia are the victims here, but I also don't know if there are people in my life who might hold that belief in silence.  I pray that I don't - but despite the common cry that "this is not typical!" or "those people do not represent the vast majority of white Americans!," all I have to do is scroll down to the comments section of any news outlet - mainstream or otherwise - to find cowards hiding behind their screen names, making vile excuses for racists.  Hundreds of them.  Thousands of them.  Pointing fingers, proclaiming the innocence of expressing pride in your heritage.

And they are all Typical White Americans.

So it's not enough anymore to say "those racists are not representative of Typical White America."  Those words are empty.  Completely meaningless.  It is easy to condemn overt, outward hate.  It is easy to cry racism in the face of a swastika or a Nazi salute.  (Unless, of course, you are the current president of the United States.)  There is no valor in calling an unabashed racist "a racist."  It's like cursing cancer or Alzheimer's disease.  Who would defend these things?  Who would call it brave to label a killer anything other than what it is?

I am terrified by the fact that these hate-filled bigots no longer feel the need to hide under white sheets anymore.  They are free to bask in the sunlight with the rest of us, speaking easily, proudly, unabashedly about their so-called White Pride.  They've taken their hate from a cloaked meeting in a far-off, secluded chamber and brought it to the streets.  They've lit up the dark corners with torches to throw light on their venom and proudly show the world the loathing in their hearts and minds.  They have no fear.  They are thriving in an American culture - a Typical White American culture - that has allowed even the smallest sliver of room for their putrescence.  But just like a mold that takes hold in damp, disgusting shadows, if left unchecked this too will spread aggressively, threatening the viability of everything good that surrounds it.

These bigots - these hateful, despised racists - are coming for all of us.  Count on that.

At work I occasionally have the honor of helping a family who has a child with a brain tumor called a glioma. Glios are particularly nasty, usually growing with a strong blood supply, spreading like tentacles throughout the brain and leaving dead tissue in their wake.  Because of this they are hard to treat: wide spread, well fed, and easily recurring because they are so difficult to completely remove.  Whenever I see that my patient has been diagnosed with a glioma I sigh, and pray, and give thanks for the good health that my children have, so far, enjoyed.

I view racism in American much like an aggressive and devastating glio, that's been well fed for centuries and allowed to grow because we have never been able to eradicate it.  But we can no longer simply ignore the malignancy that has been growing in the shadows, hoping that our meaningless words will wipe away the diseased thinking that is increasingly entering the mainstream.  It's time to burn it away - burn it all away, even the parts that may singe ourselves.  It's time to stop saying "that's not me," feeling offended by the notion that we, as white people, are being lumped in with Those People.  Friends - we are lumped in with those people.  They are a reflection of Typical White America.  We can resent this fact.  But it is not the targets of the racists - those with brown skin, or different faiths, or sexual identities you may not understand, those who have been pleading with us for generations to right the wrongs - who we should resent.  It is the racist.  It is the vile bigot shouting Heil Hitler! or Heil Trump! who we should resent.  They should be the target of our anger, our indignation and our action: the Typical White American who has taken off his white robes and walked freely down the street, shouting pride in his circumstance and declaring war on those who may threaten it.

But even this is not enough.

Because if you stop at denouncing the racist and refuse to look more closely at The Rest Of Us - those of us who truly loathe the proud bigot - then you are complicit.  You can't shout at the disease and make it disappear; you have to understand why it arose in the first place.  You have to look at the environment, at the factors that fed it.  You have to understand what allowed it to take hold and thrive.  Until The Rest Of Us can do that then we will forever fail.  Until we acknowledge that there is a mindset of privilege amongst not just Them but also Us, we cannot kill this diseased thinking.  Racism is a core belief that we are more than, better than, and solely deserving of power and authority, simply based upon our race.  "Black Lives Matter," the Anti-Defamation League and the LGBTQ movement do not assert this - they only beg us to acknowledge the lie of racism.  They shout into a void of deaf white ears who stubbornly refuse to believe that systems in America skew to serve White America.  You can believe that you are opposed to the mindset of racism, but until you examine your life and acknowledge that you benefit from it - and that others suffer from it - then the disease wins.

The racists are counting on us to avoid the painful work of self-examination.  They are using the discomfort we feel from hearing "Black Lives Matter" to keep us from rooting out the blight of privilege and hoping that it incites just enough resentment that we won't make room at the table for All Americans, not just Typical White America.  They are banking on us - and they have been proven right time and time again - turning the desperately angry voices of marginalized people into personal assaults; they know that we will continue to think of the black community's demands to strip away privilege and level the playing field as some sort of bizarre "reverse racism" (a laughable and twisted psychology if ever there was); they incite us to believe that marriage equality will forever destroy the fabric of American life; they scare us into believing that the Jew or the Muslim is engaged on an unrelenting crusade to destroy us.

The cowards marching down the streets of Charlottesville are the true threat to the fabric of America.  We can't avoid the hard work of self-examination simply because our white skin protects us - for now - from their hate.  I promise you, we cannot hide behind this skin forever.  Typical White America is vulnerable to this disease and our meaningless denouncements will not eradicate it.  We must also examine our own complicity in allowing it to spread.  "This cancer is bad" isn't enough.  We must take a long, hard, clinical look at how it has invaded our Typical White American body - and then we have to painfully and mercilessly cut it out, removing every trace of it so it can no longer take root and spread.

And so I find myself sighing, and praying again - but I cannot give thanks for escaping this disease because it is slowly, and ever more aggressively, attacking us.  All of us.  Hatred, like a devastating glio, only leaves death and loss in it's wake.

Thursday, August 03, 2017

Unsung hero



Coming to Colorado for a month was, as I’ve mentioned, no small undertaking.  The cost, planning and logistics aside, we all had to make some sacrifices to be here: the comfort of our own beds, proximity to family and friends, abandoning our gardens, the absence of a familiar routine.

The one person who probably felt this the most, because she had the least to say about it, was Sara.  And she has really been pretty amazing through it all.  It was asking a whole lot of an eleven year old girl to move two time zones away from her best friends and her beloved riding lessons, in the middle of summer, just so her parents could spend a disproportionate amount of time and attention on one of her siblings.  Although we’ve tried to do our best to make sure that there were some adventures for her along the way – manning an ATV and scaling a peak in Rocky Mountain National Park, to name just two – this has absolutely, positively been The Becca Show.

Make no mistake, there is no way we could have done this without Sara.  That’s no exaggeration.  She became the de facto babysitter for hours upon hours upon hours of therapy time.  Sometimes, she not only had Libby to wrangle but Bex, too.  And as I sit here and really think on it, I can honestly say that she never once complained about it.  I mean, her eyes may have said “I’m pretty much over this,” but she soldiered on.  It’s really remarkable.

On Day One the five of us walked into STAR, not knowing what to expect.  Rob and Becca and I had a two hour eval block that day, which left Sara to manage Libby while we were back in the gym.  We checked on her a time or two, and things were well in hand; the waiting area in a clinic that caters to the SPD crowd has plenty of things for little kids to do to stay occupied while they wait for their appointments, so Libby had lots of toys to distract her.  The next day, Juay, the receptionist, commented on how fantastically Sara handled Libby while we were gone.  I think she expect to have to manage a train wreck in our absence; instead, Juay couldn’t say enough good things about how well Sara talked, played with, and redirected her baby sister.  When we said she was only eleven Juay was shocked – she had assumed she was at least 16.

Sara has always been an old soul, born at a time when there was a fair amount of stress and heartache in our lives, then followed by a few years of recalculating a route which had been blown irretrievably off course.  Sometimes I wish it wasn’t that way, but I think she wears it well.

During our follow-up with Mim after the initial assessment she asked us about our concerns and goals for Becca.  One of the first that I had was how we could include Sara in this plan.  Sara loves being a big sister, and she’s a good one.  But like her Papa and baby sister, Sara likes to play hard and fast and because of this Bex has always held her just a little bit at arm’s length.  It’s hard to see what appears to be a three year old rejecting her big sister, but as we’ve come to learn “hard and fast” are just way too overwhelming for Bex.  Sara has never said anything explicitly, but I suspect she feels Becca’s flight from this kind of play as rejection, too.  So for me, finding a way to repair that connection was important.

When we first got here we talked with Sara about why we made this trip – how we needed help trying to unravel the mystery that is Becca, how we hoped it would help her grow in all of her skills, and how we were thinking long term about how she would do in school, or even where she would go to school.  These are big thoughts for a young mind, but it seemed important to give Sara a framework for understanding the chaos that we had opened ourselves up to this summer. In typical Sara fashion she took it all in without really providing us any insight to how she felt about it.

Because of the type of program this is, therapy time has always been limited to just me, Rob and Bex.  Rob and I have talked to Sara about what we are doing and learning, in as much as we can communicate what we ourselves are struggling to process.  But today, after three and a half weeks of waiting in the wings, Sara got to participate, too.  While Rob wrangled Libby I played with Becca, bouncing around the gym as we do, trying my best to model all of the things that we have been learning: follow her lead; slow down; get down at her level; support – not too little, not too much; give her time to decompress; connect, connect, connect.  At the same time Mim was explaining to Sara, my amazing, wise, tender-hearted eleven year old, what I was doing and why.  And pretty soon Mim had Sara get in on the play, too.  She did her very best to slow down, to wait, to follow Becca’s lead.  And I could tell: IT WAS HARD.  So hard for my adventure girl who loves to run and climb and jump and twirl through life.  But she did it.  She got in the ball pit and pretended to be asleep so Becca could wake her up.  She climbed up the tower and helped Becca onto the zip line – never once asking if she could do it herself (although I am absolutely certain she was dying inside).  She followed Bex over to the exercise balls and went, slowly, from ball to ball until she got the one that Becca wanted.  And I couldn’t have done it better myself, to tell you the truth. 

As the appointment started to wind down Mim and I talked about what she had shared with Sara and how I hoped we could work on doing more things at home.  At the same time I spied Sara, across the gym, helping Bex up the climbing wall – because, of course she is.  But something different was happening here.  Sara wasn’t egging Becca on to climb like she usually does, because it’s something she would want to do; this time Sara was standing behind, supporting Bex for as long as she wanted to climb.  And when she was done, she turned to Sara and reached for her and hugged her.  A big, bear hug around the neck.

I was over the moon.  Sara was, too.

Sara really is the unsung hero in our little story.  We asked so much of her and she got comparatively little in return.  But maybe, just maybe, in addition to scaling that Rocky Mountain peak and wheeling around on the ATV, maybe that hug today made a lot of her efforts worthwhile.

My kids.   I tell you, every single one of them makes me a better person.  It’s a hard job, but being a mother worthy of knowing and raising these girls is the best gig in the world.  I’m so lucky I got it and I’m so honored to do it.  It’s a job that won’t last forever though, and I need to make sure I get it right – for all of them.

Tuesday, August 01, 2017


So about that unicorn…

“Engagement” has been the name of the game, almost literally, for us over the last three weeks (plus one day).  When we got here this is not what I expected – I thought we would find out more about Becca’s particular brand of SPD, get tipped off into the ways it is manifesting that maybe we weren’t tuned into, and learn about how to help her navigate through the world with all of that in mind.

Uh, not so much.  What we really found out was that before we could help her juggle the building blocks of sensory development we needed to help Becca engage with us.  What does that mean, exactly?  Well, there are entire books about this.  Entire conferences on what it is, why it’s important, how to help establish it.  And in all honesty, I’m still grappling with the whole idea, as it’s not something I’ve had to think about with my other kids.

Basically, we are trying to enter into Becca’s world, where she is, and connect with her.  This sounds nebulous, I know.  And when I look at this through my professional goggles it sounds nearly identical to what we try to do with children who have autism.  Dr. Stanley Greenspan, who I quoted a few days ago, has written a book that our OT, Mim, recommended to us.  “Don’t get hung up on the title,” she said.  “It’s called Engaging Autism, but really it should just be called Engaging Children.”

I won’t lie: it was hard for me to accept the idea that I wasn’t engaging with my child, or that I needed experts to help me do it with Becca.  But child development is a crazy magnificent thing, and when things proceed typically this isn’t usually something you have to be super intentional about (at least in the deliberate way we are going about it).  But children with developmental delays, or those who have problems with sensory regulation, don’t develop typically; things don’t unfold in the predicted sequence, taking longer in some areas, maybe skipping over others.  Development is uneven; when you have to master all of steps 1-6 before you can master step 7, but somehow you missed step 2, you run into roadblocks.

Engagement is Becca’s step 2.  It means that she can connect with us as with the task at hand, be it crawling around in the ball pit, playing a “night night” game or chasing lights around a darkened room.  She can play with us, not just beside us.  Engagement is about the relationship she has with us – and I think this is why it’s hard for me to wrap my mind around why we need to be intentional about it, because Rob and I definitely have loving, affectionate relationships with Bex.  But that is a different thing than getting her to engage with us while she is immersed in another activity – one that might be hard work, or soothing, or simply just really enjoyable to her.  Asking our girl who struggles to get her sensory motor running to invite us into her play, without revving her engine so much that the car stalls, is a difficult task.

Engagement is a powerful tool.  It harnesses the strength of our relationships – trust, love, comfort, confidence – and allows those things to undergird things that are harder for her – sensory regulation, language, motor skills.  By intentionally engaging with her, right where she is, we give her opportunities to practice these things, build on them, and expand her abilities.  One minute of engagement becomes five, then seven or ten or maybe 30.  As our opportunities to engage increase, so do our opportunities to help her expand her language and communication or to simply give her experiences where she can practice these things on her own.  We have seen her become less overwhelmed by her environment and more curious about it – less flight from one activity to another, more interest in what does this do? and how can I make that happen? 

I don’t want to paint the picture that Rob and I have this whole engagement thing mastered.  Like I said, it takes a lot of mental work (how, exactly, do I engage with a girl who is lying in the back of a dark closet?) and physical work (up and down from the floor to the ball pit to the closet to the Rainbow room to the floor again and now to the tower!).  Dr. Greenspan’s approach for working on engagement is called “Floortime” for a reason; getting yourself down, physically, to your child’s eye level is a key element to this type of work.  And although we are playing, it is absolutely a lot of work, for all of us.

Floortime is a method of intervention that is based upon Greenspan’s model for understanding child development, called D.I.R – Developmental, Individual differences, and Relationship-based.  It is summarized nicely here:

The objectives of the DIR® Model are to build healthy foundations for social, emotional, and intellectual capacities rather than focusing on skills and isolated behaviors.

·         The D (Developmental) part of the Model describes the building blocks of this foundation. Understanding where the child is developmentally is critical to planning a treatment program. The Six Developmental Capacities/Levels describes the developmental milestones that every child must master for healthy emotional and intellectual growth. This includes helping children to develop capacities to attend and remain calm and regulated, engage and relate to others, initiate and respond to all types of communication beginning with emotional and social affect based gestures, engage in shared social problem-solving and intentional behavior involving a continuous flow of  interactions in a row, use ideas to communicate needs and think and play creatively, and build bridges between  ideas in logical ways which lead to higher level capacities to think in multicausal, grey area and reflective ways.   These developmental capacities are essential for spontaneous and empathic relationships as well as the mastery of academic skills. 

·         The I (Individual differences) part of the Model describes the unique biologically-based ways each child takes in, regulates, responds to, and comprehends sensations such as sound, touch, and the planning and sequencing of actions and ideas.  Some children, for example, are very hyper responsive to touch and sound, while others are under-reactive, and still others seek out these sensations. The term "Biological Challenges" describes the various processing issues that make up a child's individual differences and that may be interfering with his ability to grow and learn  

·         The R (Relationship-based) part of the Model describes the learning relationships with caregivers, educators, therapists, peers, and others who tailor their affect based interactions to the child’s individual differences and developmental capacities to enable progress in mastering the essential foundations.” 

For Becca, this means understanding where she is developmentally, across all domains; understanding how she regulates sensory input; and how our relationships with her will help her to progress.

It’s a lot.  Yes, I know.  And really this is a final exam, I hope the teacher is feeling generous sort of overview of everything.  But I think it’s enough (I hope it’s enough) to help paint a picture of where we are starting with Becca.  Because, oh yes, this is just a start.  Engagement is our ticket in; it’s the way we lay a foundation to do more of the hard work in language, and communication, and play, and sensory regulation, and early academic skills and on and on and on.

It is daunting.

But here is all we have been asked to do and remember: Just play with Becca.  If she is lying in the closet, get down on the floor and play “night night” with her.  Over, and over, and over and over.  Be as amazed by how fun this is as she is.  Be amazed through the boredom of playing in a closet, over and over. Watch for a little sparkle – and then go there.  Do it again and again.  Expand the game; maybe Foof goes night night, or Papa, or maybe Becca needs to wake everyone up.  Do it again.  Again and again.  Don’t overburden her with lots of language or physical demands – but recognize when she is seeking out those physical demands and don’t overburden her with expectations of lots of engagement.  Dot it again.  Again.  Watch for more sparkle – and then stay there longer.  Wait for more exchanges or patterns.  Start to give language to her game.  Stretch things, just a little, to expand the play.  Support her.  Follow her lead.  Do it again.  Figure out how to do it when her play is looking for the stuffed kitty cat, or walking down a ramp, or squishing a ball on her head.  Follow her lead.  Be amazed at how fun this is.  Watch for the sparkle – go there.  Again and again.  Wait for her.  Slow down.  Keep her in her “just right” zone.  Do it again, and again, and again.

Play with her.

And now you’ve glimpsed the unicorn.  I will say – it truly is magical when you see it, and it leaves me a little melancholy when it disappears again.   But I know it’s out there, and I’m not going to stop looking for it. 

Soon Rob and I will stalk the unicorn on our own.  I think we can do it.  I know I’ve got a great team back at STAR that will point me in the right direction when we find ourselves in the weeds, and I know we’ve got a great team at home who will help us track the unicorn, too.  Because really, the unicorn is right here.  It’s Becca.  She is as fabulously magical and pure as the legendary creature and I know that once we draw her out we will find a strong and fierce girl, capable of overcoming whatever stands in her way.

Unicorns, yo.  Don’t mess with them.  Wild and beautiful and capable of anything.

That’s Bex.

Sunday, July 30, 2017

Herding cats and the promise of a unicorn



I am sure there is a deliberate rhythm to this place, a plan to walk you from Point A to Point B with specific checkpoints along the way.  I am also sure that our experience is nothing new to the clinicians here.  But as someone who is normally sitting on the other side of the table it has been an eye-opening process.  I know I try to be very deliberate in the way that I lead families through education and goal setting, or through coming to terms with facts that are unexpected (or worse) – and I am also very certain that I am not this good at it.

But I am getting ahead of myself.  So I guess we start at the beginning, right?

With nearly a year to anticipate this trip we could have allowed ourselves to pin a whole lot of hopes and expectations on this experience.  I’m glad we didn’t do that.  Mostly I would say that it was (for me at least) an exercise in patience, waiting for answers that I was certain we would find, but not knowing what they would be, how they would impact Becca or our family, if we would be able to implement them in a way that would bring about meaningful change or improvements…  I didn’t really even know the questions, let alone the answers.  So the waiting was hard.

As far as STAR goes I can obviously only speak to our experience.  I am certain other families may go through a different process, depending on the age of their child and what their goals might be.  (And it’s important to note that STAR is not just for kids – I have seen plenty of older adolescents and adults here as well.  SPD doesn’t come with an expiration date.)  But as for me and my crew, we hit the ground running with a two hour evaluation, both with what appeared to be some variety of formal testing  followed by observation of Becca in the gym.  The entire assessment was videotaped for Mim, our OT, to review later (and it is also available for them to use for other educational purposes, too).  That evening we spent two more hours filling out several (six? seven? eight, maybe?) parent reports, list after list after list of behaviors or observations that we needed to fit onto various scales.
Honestly I love my kid to pieces but I don’t know anyone well enough to answer 800 questions about them.  (800 is a guess…. but I’ll bet it’s a really good one.)
So let’s just say the parent reports were mentally exhausting.  Which was too bad, because day two was a three hour day:  an hour going over the test results and getting an introductory crash course in SPD; another hour taking those results and framing out our goals for Becca (not for the next four weeks but for the next several months); and, finally, the first hour of therapy.
And oh brother, this therapy. 
What do we do?  We play.  That’s about it, just… play.  But you would be shocked at how difficult it is to play with your three year old when you have learned that you’ve been doing it all wrong.  (My words, not theirs.)
This is where things get sticky.  I have wrestled with how far or deep to delve into all of this.  I’m fascinated, professionally, about what we are learning.  I’m struggling mightly as a parent to absorb every last ounce of information.  And there is so much – so much that is not what I was expecting at all, more basic even than understanding how Becca’s body processes all of the sensory input she is getting.
But I need to back up.  Before Mim introduced us to a new style of intervention, she talked to us about what makes Bex tick.  And because I am not an expert, and because no one is reading this to get bored by tedious details, I’ll sum up:  Becca is under-responsive to the world around her – but providing the right kind and amount of input to “wake her up” is tricky, because she can bounce from zero to 100 very quickly… only to crash back down to zero again.
The visual they use is a helpful one: Picture a bell curve.  The center third, at the peak of the curve, is where most people – at least those who don’t have significant issues with SPD – function throughout the day.  It’s the sweet spot, the “just right” spot where you are alert and engaged but not wired.  We can work, run errands, do the laundry, play with the kids, read a book, whatever.  We feel like ourselves in this space.
Becca lives at the bottom left end of that bell curve.  Her arousal level is low.  This doesn’t mean she isn’t awake, it just means that her baseline is low energy – try to remember the photo of her lying on our threshold, milk propped up right in front of her so she didn’t even have to hold it.  On top of this, most people with SPD don’t have a nice, wide sweet spot on their bell curve.  Instead, they have a narrow band in which to function at their “just right” level.  So not only do we need to know how best to get Bex more aroused but we also need to help her find, and maintain, that zone that allows her to function at her best.
If the phrase “herding cats” comes to mind you are not alone because that is often what this feels like in practice.
So that is the first thing: we need to metaphorically wake her up, then help her find that sweet spot so she can interact with the world in the best way possible.  But we can’t overshoot it, either, because then she just spins out of control until she crashes back down to her baseline.
From a sensory perspective, this seems to me to be the starting point.  Once we help her learn how to regulate this then we can work up through higher levels of sensory demand, some which will not emerge developmentally for several years.

But in fact we are actually starting at a place that comes before this, at a developmental stage that typically emerges before all of the other familiar milestones start to arise.  Our job right now is to help Becca engage with her world and, most importantly, with us.  This is our portal, so to speak, to help her learn how to regulate her sensory needs which, in turn, will undergird her efforts in other areas.

Engagement is a big but simple idea.  I think it is kind of magical – both in the way that a child’s first visit with Mickey Mouse is magical and in the way that unicorns are magical: full of wonderment but oh, so elusive.

We’ll talk more about the unicorn next time.

 

Tuesday, July 25, 2017

She is not her disorder


"Why is little Johnny or Susie doing that? And to simply say it's because he or she has this or that disorder; that it's due to their autism or due to their Down Syndrome or due to their "this or that" doesn't answer the question. Little Johnny or Susie are human beings. They may have a disorder or a set of problems, but they are not the disorder or set of problems. They are human beings with real feelings and real desires and real wishes." – Stanley Greenspan, MD


First of all – thank you.
So many of you have taken the time to make comments and share your good thoughts and prayers for us and for Becca.  Please know that we value every word and prayer.  When we started this adventure we knew we were in for a big job.   What we have found is a monumental task.  We are grateful that there are so many of you – aunts, uncles, grandparents, friends, even a few perfect strangers – who are coming along beside us to help along the way.  This will be the closest I ever come to having a crowd cheer me on as I start a long, hard marathon.  We can feel your support and energy coming from the sidelines, and it is appreciated.

Today was hard.  Rob and I both felt it, and it is a little deflating.  I don’t think we’re losing ground and I don’t think we’ve hit a wall.  I suspect we’re all tired, despite taking the weekend off to focus on resting, and we’ve become accustomed to exciting and motivating bursts of big change.  But if this is our marathon we have to remember that we can’t sprint the entire way.    We have to push forward at a reasonable pace, otherwise we’re all going to fall apart before we reach the finish line.

And thus concludes my one and only sports metaphor.  (You’re welcome.)

At some point I hope to share with you some of the specifics of what we are learning and doing.  The quote above actually speaks quite directly to where we are in this journey.  We are trying to connect with Bex in new ways to help her find her equilibrium and, eventually, her voice. Right now we are still processing things, trying to make sense of what we thought we knew in the face of what seems to be a new set of goals.  In many ways, at least to me, it feels like we took more than a few steps back when we came here.  Becca has emerging skills but they aren’t necessarily built on a solid foundation; right now we are shoring up that foundation and it is painstaking but necessary.  I now see the veil that separated us from Bex not as something to merely push aside when it’s in our way but as a barrier that needs dismantling, and that can only be done once she is working from solid ground.  That’s a much tougher job.

I don’t have anything profound to share tonight.  We are tired but pressing on. I can’t speak for Rob but I’m fighting the urge to check out because oh, it would be so much easier (I won’t, I promise).  There will be lots of these times when we feel like we’re stuck; right now we still have the benefit of experts to help us find our way through. 

In the meantime we will just keep loving our girl, just as she is, because this kid isn’t her disorder and she is pretty amazing already. 

 

 

Friday, July 21, 2017

Onward


So let’s talk about what we aren’t doing out here.

We aren’t curing anything.  SPD doesn’t go away.  (That hurts to write.  Ugh.)  SPD is something Becca will learn to live with, just like thousands of other kids and adults out there.  Frankly, I suspect we all have our “sensory thing” to one extent or another, but when it becomes something that interferes with your ability to function independently… that’s when you get help.  To one degree or another SPD will become a way of life for all of us, but most especially for Bex.  As much as my heart wishes we could just make this go away, my head knows that hard work and consistency will make things manageable.  I’m hopeful that someday Becca’s experience of the world will be a strength that allows her to not only thrive but that will allow her to share her unique perspective with the people and communities around her.  Becca has a kindness and a sparkle that can’t be beat.  It’s fun to imagine how she might unleash that on the world someday.

We aren’t expecting miracles.  Look: I’m not going to lie, as the departure date grew closer I became more and more anxious that maybe we had made a mistake.  I couldn’t (and still can’t) bear the thought that we had uprooted our family for nothing – all the hours invested in researching, planning, financing, preparing…  it’s just so much.  But we’ve never expected a magic bullet.  We’re just looking for more tools that we can use to harness even greater gains in her other therapies. 

We aren’t doing those either – other therapies, I mean.  No PT, no speech.  In fact in many ways we are using this time to strip those things away.  And – real talk here – that is HARD HARD HARD for this speech pathologist to do.  I can’t tell you how many times I have seen perfect opportunities to build on a phrase or reinforce concepts….  But that’s not why we are here.  Right now we are lifting the burden of those things (language, speech, running, jumping) so that Becca can engage her body and mind with her environment and with us.  But here’s what’s amazing:  in spite of very deliberately paring those things away, they are emerging, too.

We aren’t becoming experts in SPD… but we are becoming experts in Bex.  This is humbling work, friends.  It would be easy to feel guilty for failing her all this time (and sometimes I do), even though I know we’ve just not had all the pieces of the puzzle yet.  I can’t tell you the number of times I have stood with parents and had conversations about complex decision-making and have said “you are the expert when it comes to your child; no one knows him better than you.”  And even though that’s still true about Rob and me when it comes to Becca, there is clearly a chapter we missed in her owner’s manual.  I have to fight off the feeling that we could have done more, sooner.  But you don’t know what you don’t know, right?  And we are here now, learning and working so hard to be the parents that she needs.

Humbling.

We aren’t resting.  Safe to say that all five of us are working hard and pretty exhausted all the time.  How do I know this?  Becca, who eats like a bird, spends her days now insisting “I HUNgry.”  Sara, our 11 year old adventure girl, when asked this morning what she would like to do today, said “can we just stay home?”  Rob and I are known to nap now and then.  And Libby… well, Libby powers through her exhaustion.  (It’s exhausting.)

We aren’t stopping.  I’m not gonna lie, I woke up this morning and I just wasn’t feeling it.  None of it: parenting, cooking, showering, learning, playing, nothing.  I threw back a handful of supplements, hoping an extra kick of Vitamin D and that B complex would get me over the hump but nope nope nope.  Sure, I got up, fed the kids, barked at my husband, went to STAR, took the feedback from Mim, came home and fed the kids again.  Then I checked out.  Because in case I haven’t mentioned it before, this program is A LOT.  Mentally, physically, and (for me at least) emotionally we are being challenged every day.  And so today, for a couple of hours, I crawled in bed and checked out.  But I’m not stopping; we aren’t stopping.  She has already come so far and I know we still have so much to learn.  Still, every now and then, we have to give ourselves a little grace.  We can check out for a while – but we will always check back in.

There’s a lot going on out here, despite all the things we aren’t doing.  We are learning to help Becca navigate through a world that is a little more chaotic than our own.  Sara is emerging as an exceptionally patient and loving big sister, shouldering a load I wish she didn’t have to but doing it (more often than not) with a good sense of humor and more maturity than you can rightfully expect from an 11 year old.  We are enjoying many of the beautiful things that Colorado has to offer.  I am finding more clarity about who and what I need to be not only for my family but for myself. 

We’re nearly half way there, and I’m fighting off the voice that whispers “how will you ever be able to keep this up after you leave” with a stronger voice that says “look how far you’ve come – imagine how much further you can go.”

Onward!