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!
 

Thursday, July 20, 2017

Turkey Talk

I don’t want it to seem like we’ve been wandering completely alone in the wilderness because that wouldn’t be fair to the wonderful teachers and therapists that have been walking along side us for the last 2 years.  They have all recognized the Thing that is there, but none of us have felt particularly equipped to deal with it.  It doesn’t help that SPD is relatively unknown and poorly understood.  Most friends and family have no idea what I’m talking about when I say it’s something we are dealing with (though many have since become quite educated, a real testament to their love for Becca); every doctor I’ve talked to – and you bet there have been a bunch of them – says something along the lines of “yeah, there’s something to it, but….”  The American Academy of Pediatrics doesn’t recognize it as a distinct disorder and the ICD-10, the international log of diagnoses, does not include it.  Consequently, insurers do not cover it.  And treatment of any kind, as you certainly know, is expensive.  Treatment that insurance won’t cover is painfully expensive – so much so that you find yourself wondering if it is a luxury you can afford.

So you start to read.  A lot.  You begin to recognize those behaviors you see every day in the descriptions provided by experts in the field.  You start to understand that the Thing is real and that there are tools to tame it – but they are hard to find and it’s difficult to know if you’re using the right one.  Eventually, you realize that this is not a DIY sort of project.  You absolutely need an expert.
It was while reading Sensational Kids that I first learned about the STAR Institute in Denver.  The author of the book, Dr. Lucy Jane Miller, is also the founder of STAR and a leading researcher in the field.  Her descriptions of their treatment philosophy and family-centered approach to intervention felt like a lighthouse cutting through SPD’s unrelenting vapor.  The more I read the more convinced I became that this is what Becca needed – or really, what Rob and I needed – to finally equip us to navigate through the fog.
But it was in Denver.  And with two jobs, three kids, and deep roots in Indiana, Denver may as well have been Timbuktu as far as I was concerned.  Because of the sheer distance and practicalities of relocating all of our lives, not to mention the overwhelming expense, I dismissed the dream to pursue this kind of treatment.  It just wasn’t realistic for us.
And then one day after Becca’s visit with her OT, Jamie, I mentioned that I was reading the book she had recommended to me.  And I had decided (ha ha, wink wink) that we needed to take Becca to STAR. 
And Jamie looked me dead in the eye and said “I think you should.”
So that was that.  Rob really didn’t take much convincing; there is literally nothing the man won’t do for his family, most especially his children.  I mentioned to my manager that I had found out about this program, and would it even be possible for me to take leave for a month?  (It would.)  I read more, stalked the STAR website, floated the idea past family and friends and finally screwed up the courage to fill out the intake form.
We were in.
* * * * * *
To say “we were in” is a gross simplification of a long and often times frustrating process of getting from There to Here.  To retell every obstacle would be tedious and pointless and, worse, might discourage someone else out there from pursuing a seemingly overwhelming goal - but trust me when I say that life threw us plenty of curveballs along the way and I lost hope more than once that we would get here.
But we did, and while the therapists and researchers are a dedicated crew, passionate about helping children and adults with a misunderstood disorder while at the same time advancing research to help the greater medical community accept and identify it….  They still have to be paid. And daily treatment sessions, uncovered by insurance, becomes very expensive very quickly.
When I first started writing this post the debate about our government's plans for healthcare was a particularly hot topic; I suppose it still is.  And while I certainly have opinions about that, it wouldn't be honest to hold Becca up as an example of one of the tens of thousands of children with complex medical conditions who rely on Medicaid to support their medical expenses.  She's not - although by now you've realized that Becca's ongoing treatment costs are significant.  We easily meet our annual family deductible (and it's higher than ever) within the first couple of months of the year.  So before we've even stopped shoveling the snow our family has paid out thousands of dollars in treatment costs, with thousands of dollars still to come as the year wears on.  And we will do it for as long as it takes because this is what she needs.
Now add to this the cost of an out-of-network program, one that insurance wouldn't pay for anyway because the nature of the treatment is to address her "developmental delays," something our insurance plan very explicitly excludes.  And this program also integrates parent education and counseling - something no insurance provider would ever cover, never mind that it is an essential piece to any treatment model. 
So the costs, at least for our very middle class family of five, are overwhelming.
I don't share this because I want anyone to feel sorry for us.  The fact is that my family has insurance - though admittedly, for our circumstances, it's not ideal - and we have the margin to make sacrifices to get our daughter what she needs.  She is also lucky enough to have a parent who works "in the biz," isn't afraid to ask questions and is in a position to ask for a few favors when necessary.  (I have picked the brains of a LOT of professionals, let's put it that way.)  The vast majority of families are not in this same situation.  It breaks my heart that they cannot make the same choices that we have made.
STAR is expensive: several thousands of dollars for 20 days of evaluations and treatment; add to that half as much again to cover travel, lodging, and food and this month-long investment hovers somewhere around $10,000, give or take.  And we, uh, don't just have $10,000 stashed in our piggy banks.  In fact the cost alone was one of those obstacles that I thought would keep us from ever getting here.  But this has proven to be another blessing of sorts, if we choose to look at it that way (and we do), because it forced us to become creative and diligent in our approach toward paying for it all. 
Countless hours of Googling, stubborn determination, a whole bunch of persuasive writing and most certainly a healthy dose of good luck resulted in us securing grant funds that covered over 75% of STAR's program costs.  Two different foundations have provided the bulk of the funding for Becca's evaluation and treatment at STAR, and when I stop to think about that it is overwhelming: perfect strangers reviewed our requests and decided that she was worth the investment. And let me tell you, they are right.

(photo submitted with applications because....  come on)
 
Grant writing wasn't new to me, and I've always enjoyed it. I mean I get to use all the words, tell a story, and hopefully win over new believers to help support a great cause.  Going through this process has only reinforced my belief that it's a path I need to continue to pursue.  There are so many places out there that want to help kids like Becca and I feel more committed than ever to helping great organizations find the funders that want to support them.  So thanks again, Becca - you've helped your mama find her way in this world. 
The least I can do is help you find yours. 
(yes, she can.)
 
 * * * * * *
If you have, or know of a child with overwhelming healthcare expenses these are two foundations that may be able to provide supports.  We cannot begin to thank them enough for their investment in our sweet Bex.  And if you have questions about how or where to begin with your own search for funding please let me know.  I'd love to help.

Monday, July 17, 2017

Fast Forward


Becca’s well child visits were pretty routine.  She looks great!  She’s growing nicely!  She’s gorgeous!  You know – the usual.  At about the 4th month the doctor wanted us to start ensuring that we were giving her enough tummy time; at the 6th month she instructed us to make sure we were working on getting her to sit up on her own.  Each visit brought another instruction: she’s OK, but just a little behind here and here; her weight is fine but make sure she is getting enough formula throughout the day.  By her first birthday this speech pathologist was officially concerned that we were dealing with quite a few delays; by her 18th month we were setting up referrals with developmental specialists.  Shortly before her 2nd birthday she finally took her first steps; first words came later.  Mid-way through her second year her physical therapist asked if we had any sensory concerns.  By her third birthday I was researching clinics and reading books on sensory processing disorder while at the same time struggling to accept the fact that my daughter, the child of a pediatric speech pathologist, still had some very significant speech and language delays.
At some point in the midst of all this the idea of “advocacy” took on new meaning for me.  I like to think that I am an advocate for all three of my kids – that I see their needs and campaign on their behalf to make sure that those needs are met.  But this was becoming something new and more urgent.  This wasn’t about getting my kid into the right school but making sure she had the opportunity to even apply to that school.  My worries were not about making sure that the world was her oyster, but that she would be able to navigate in this world independently.  
These are still my worries.
In case you’ve never spent much time with a speech pathologist, it might be helpful to know that we have, and use, a lot of words.  After all it’s baked right into our title.  We are also passionate about doing everything we can to meet the needs of the people we are serving and fighting to get the resources our patients/clients/students need.  Given these two facts you can imagine the exponential drive you feel when you are working on behalf of your own child. So when an early intervention team told me –me,  a pediatric speech pathologist – that they weren’t recommending speech services for my almost two year old who had, at that point, maybe 5 words (intelligible to a familiar listener), well…  they heard about it.  They heard a LOT about it.  I had plenty to say about that decision and found plenty of peer-reviewed evidence to refute their offer.  (It also helps to know a lot of other speech pathologists who had plenty to say about this decision, too. Becca had an army behind her, let me tell you.)  And to my great relief – and theirs too, I am sure – they relented.  
This would not be the last time I put on my armor and went to battle for my kid. And I know I haven't seen the end of it, either. Because of her I am more courageous and determined than I ever knew I could be. One of a million ways this girl has made me a better mother, friend, therapist and advocate. I owe her more than she will ever know.
Soon enough our girl was getting speech, physical and occupation therapies.  Three hours of therapy a week. We started "preschool" a year or so earlier than we had planned, with the hope that more peer interaction would provide good models for her. Eventually we added SMOs - those short little orthotic "braces" you sometimes see kids wearing - to help stabilize her ankles to improve her walking/climbing/running skills; we even tried a (very brief) stint with a pressure vest but that proved one bridge too far for this mama. All the while the gains came, but oh so slowly. So I asked her SLP, a friend and colleague from work, if she knew of any other resources we might consider. She suggested a local clinic that integrates hippo therapy into their program. And before long we added two more hours of therapy - five hours of therapy, every week, plus two 6 hours days of preschool. Throw in the random visit with the developmental pediatrician, ear, nose & throat doctor, audiologist, orthotist and orthopedic physician and the child had a busier calendar than I did.

The gains continued to come, but still so very slowly; for every 2 weeks of spectacular progress there were 6-8 months of hard work that preceded. Throughout all of this I continued to ask more questions about sensory processing and tried to make sense of how this was, or wasn't, impacting Becca's progress. I have described it many different ways: a fog, a veil, "Becca's World;" at the end of the day SPD feels like a barrier that keeps us from reaching her, and Becca from realizing her full potential. But my training as an SLP didn't equip me with the knowledge or the skills to figure out what was at the root of the fog or how to help burn it off.
Eventually I decided that this was a riddle we couldn't solve on our own, and the treatment models - familiar to me through my own clinical experiences - used by most clinics are valuable for identifying, addressing, and measuring very specific goals but they weren't ideal for helping kids and families unravel SPD. I felt like we were stuck, and I couldn't see a way ahead that would get us where we wanted her to be.
And then I found STAR.


Friday, July 14, 2017

Rewind

My three year old daughter, Rebecca Jane, came into this world with both arms swinging.  Literally.
To say that Becca was a surprise is an understatement.  To suggest that she was a miracle may be an overstatement – but to her father and me I’d say it sounds just about right.  After eight years of waiting and wondering, the hope of adding to our family was something I was struggling to let go of but for the peace of mind I’d decided I needed to do it.  And then, of course, right on cue – it happened.
I spent those 9 months mostly scared that I would lose her.  Worried that, at my age, something would go wrong.  The fear was so intense that my body shook uncontrollably at the first ultrasound confirming the pregnancy; I was convinced that she wouldn’t be there, that my body had played a terrible trick on me.  But she was there for sure, her heart beating like a champ.  And at every visit thereafter we checked, and that strong beat-beat-beat just got stronger.  The prenatal tests, offered to pregnant ladies “of a certain age,” all came back normal.  This was really happening.  And every prayer was being answered along the way.
Around the 8th month we took a trip to Walt Disney World.  (A lady who is 8 months pregnant only goes to Disney World when she booked the trip long before discovering she would be 8 months pregnant when she got there.)  The trip was fine, even as fun as it could be under the circumstances, but it was a turning point because at about that same time my body started making a little too much amniotic fluid.  Not the biggest deal, really – and certainly better than not making enough – but because of this little Becca Jane had quite the swimming pool to play around in.  And boy did she, because every week we would come in for our 9th month visits and every week she had moved to a new position.  Instead of settling in for her move-out date Miss Bex decided she liked acrobatics and so, because we didn’t know how she’d present when I went into labor, a c-section became the safest choice.
I’d had a c-section with my oldest child, too, and so the thought of it didn’t scare me.  It was a little weird scheduling my baby’s birth, but I was OK with it.  (Actually, the control freak in me loved it.)  The day arrived, we headed to the hospital and after an oddly unceremonial admission I found myself in the surgical suite succumbing to anesthesia-induced vomiting but still so amazed that I was really going to be holding this little miracle in just a few short minutes.
But it wasn’t a few short minutes.  Becca’s acrobatics never let up and the two OBs who were there for the delivery (you get two when you are old and have a gymnast living in your belly) struggled to bring her safely into the world.   If you’ve never had a c-section you might not know this, but the truth is that at that time you are absolutely the least important thing in the room.  With the exception of the anesthesiologist, every last set of eyes is focused on that open belly and the little life that is about to emerge from it.  At some point between the waves of nausea I realized that we had been there for an awfully long time, and that the conversation between the husband and wife team that was delivering my child wasn’t as light-hearted as usual.  After the fact Rob would tell me that Becca did so many flips and flops during the surgery that they had to push her back into my uterus, because  you don’t deliver babies hands-first.  Or butts first, or feet first if you can help it.  But finally she arrived.  Icky and furious, just like healthy babies do.  But here at last – healthy and miraculously ours.
The problems started later that day.  At some point her breathing became labored; my sister and mother-in-law, both retired nurses,  told me a few weeks after she was home that they saw the chest retractions in the nursery and knew something was wrong.  The NICU team was called down to check on her a couple of times; eventually they took her away.  A doctor came in the middle of the night to tell us what was happening and what they were going to do; at some point there was talk of an n-g tube, a thin tube used to feed babies who aren’t well enough to eat safely on their own.  I was stuck in my room, still vomiting from the anesthesia.  Rob bounced back and forth between the floors, telling me what I needed to know and holding on to the things I didn’t need to know until I could process them later.  The next day I finally got to go see her; 24 hours later I properly met my baby girl.  I asked the nurse if I could hold her – my own baby.  I cried when she picked her up and put her in my arms, a mix of happy and sad and scared tears.  She had a splint on her arm and lots of lines to monitor her vitals and she was covered in bruises from the shoulders down, courtesy of her bumpy entry into the world. But she was beautiful to be sure.

Our NICU story isn’t all that dramatic.  Becca had a small pneumothorax, a space between the lung and the chest wall that was filled with air. A couple of non-invasive treatments took care of this and her breathing improved.  But her feeding wasn’t great and her monitors alarmed enough with low heart rates and oxygen desaturations that she bought herself a week-long stay in one of the pricier rooms at the hospital.
I went home, without her, three days after she was born.  It was one of the saddest experiences I’ve ever had.
As NICU babies go Becca was a monster, born full term and with relatively minor medical issues.  Not that I found this particularly comforting at the time, but as someone who sees medically complex and fragile infants at work, I knew she wasn’t in any imminent danger.  This can’t be said for so many other families who spend weeks or even months in the NICU, becoming experts in medical jargon and managing tubes and leads and monitors – all the gear required to keep their children alive.  I marvel at these parents.  They are amazing.

Life at home with our newborn girl was relatively uneventful.  We slept little; she cried a lot.  The painful reflux subsided and her sweet disposition emerged.  She had the cutest little toes, and cheeks for days.  She loved her swing.  She cooed and smiled and rolled over; she mastered the spoon and her cheeks got chubbier.  She and the dog engaged in a mutual love affair.  My first-born became the Best Big Sister, Ever.  The dream really had come true.

Wednesday, July 12, 2017

Exhale:Inhale


It was about 4:30 in the afternoon yesterday when I finally got to exhale.
I find it hard to believe that there is actually a single soul out there that doesn’t know this already, but our little family packed up the minivan and headed out west last weekend for a month-long investment in our middle child.  Five people, one dog, and a ridiculous number of electronic devices made the 20 hour drive to Denver to see if we could start to unravel some of the mysteries that bind up our sweet Bex.
But really, the 20 hour drive was the easy part.  This adventure has been over a year in the making, starting with a book, a desire, and a ha-ha joke that didn’t end up being such a crazy idea after all.  It took phone calls – so very very many phone calls – and more favors than I can begin to recall.  It took patience and faith, both in very short supply in this little heart of mine, and reassurance from friends who reminded me that sometimes I have to just wait things out, even when I don’t want to.  It took courage to ask for extraordinary consideration from not one but two large employers who really didn’t have to accommodate us to make this journey and learn about a disorder that is unknown to most and poorly understood by many.  It took a foolish, stubborn refusal to acknowledge financial reality and a lot of persuasive writing to convince perfect strangers to invest in our hopes for our little girl.
And now, after all of that we are here.  The suitcases are unpacked and we are five hours into a 45 hour intensive program to help us learn how to parent a child whose brain is wired just a little differently.  It was after that fifth hour, on our way home from a mentally and physically exhausting three hour day, that I finally allowed the doubts to subside and my throat to relax.  No more holding my breath.  I got to exhale.
Now inhale.  This is when the real work begins.

Sensory processing disorder (SPD) has been vexing me for nearly 4 years but I didn’t recognize it until we were neck deep into therapies and appointments with specialists and wondering how many different programs we could have the poor kid doing at once; I still wish we could find a way to take her to KinderMusik and swimming, and I’ve read that martial arts have nice carry-over benefits for executive functioning.  But at the end of the day there is always this Thing, this vapor that seems to surround her and never really dissipates.  Our girl is in there – we see flashes of her humor and intelligence, and her sweet, gentle heart is obvious to everyone who meets her - but we can’t cut through the fog to help her find the way out.  That is what SPD looks like in our lives. 
But it’s different for others.  In some there is a hypersensitivity to touch, sound or light.  In others it might be an incessant need to move, jump or spin.  Some might love the feel of tight clothes on their bodies; others might cringe at the lightest touch.  One person might love to feel different textures, another might hate the feeling of anything on their skin.  SPD is no one set of symptoms, and it often manifests itself in a variety of ways in one individual person.
After a two hour evaluation, and another two hours of filling out parent reports, our occupational therapist (or OT for short), Mim, sat down with us yesterday to talk about how SPD seems to be presenting itself in Bex: decreased arousal, sensory under-responsivity, and sensory discrimination disorder – specifically in regards to position/movement.  What does this look like?  It looks like this:


More often than not you will find Bex laying on the floor, the counter, the sidewalk… any place hard and relatively flat.  You might see her with a handful of Playdoh, but instead of squishing it in her hands or rolling it into a snake she has it pressed against her face.  As an infant Becca would seek out ceiling fans and could spend several minutes just staring at them; now you’ll be more likely to find her on the floor, next to her beloved black lab, shaking her head back and forth.  When she is running around like a typical toddler you might notice that her run is erratic, arms and legs akimbo, and that she often trips over literally nothing.
This is what SPD looks like at our house.
What Mim said yesterday didn’t particularly surprise me but it was reassuring to hear that what we see really does exist, has a cause, and can be addressed.  Knowing that we were there with someone who not only sees what we do but also sees the path to helping Becca learn to regulate these things was a relief.  She’s like our SPD Sherpa: our guide who does an awful lot of the heavy lifting but whose goal is to help Becca, Rob and me make it to that summit that seems impossibly far away. I can’t image how we will get there but Mim is a believer. And a believer is what we need right now.