Tuesday, May 12, 2015

Sensory Processing

{whew, i knew it had been a while since i wrote - but 3+ months??  since it's been so long, this one covers quite a lot - just forewarning you!!}

So, where we apparently last left off, I was explaining about Harper (you can read the first post here).  I received so many kind comments from that, both here and in real life, that I just wanted to say thank you!  and also provide a little follow up.  I know I tend to be a sharer, and many people have asked how she's doing - so this is an easy way to update all in a more coherent way than I am usually able to produce when someone asks me in real life. 

But here's the thing...  When Harper was born with clubfoot, I readily blogged about it, and those posts have helped so many and have generated great conversations among the community of clubfoot parents.  I'm so glad I wrote all that!  Yet clubfoot was an easy thing to pin down - it's a foot, you do xyz to fix it, add in time and boom - problem solved.  I assume and hope Harper will never be embarrassed or ashamed of this part of her story - there's no reason to be.  It happened.  It's (almost!) done.  

Yet this complicated, messy business we are beginning to unwrap now isn't as black and white.  It's very much gray.  There aren't steps or specifics or even answers right now, and that's a little scary.  This is likely something that will follow her for all of her life, even if we do find strategies to manage it fully to where it's just a background issue.  And the trouble lies there - I'm not sure I really want to write all about it since it's her struggle - her story.  I know I've read a lot of other blog posts about mamas who are hesitant to write about their kids as they get older.  The internet lives forever, presumably, and will Harper want her highschool boyfriend (ah!) to read all about the challenges of her youth? (ok, I know that's drastic, but you get the idea).  I love writing and sharing and pouring out emotions through the keys in a way I cannot process verbally.  But who is this serving?  I don't know.  Either way, I'm going to write about it today, but I'm unsure how much I will write in the future. 


So, back to Harper. 

Back in January, as I wrote, we had seen one of the PA's at our pediatrician practice for her 2.5 year check up.  I brought up the concerns school had outlined as part of this routine visit.  She suggested we do speech therapy and see a developmental pediatrician.  She did listen to me and was very empathetic, yet in a way I felt a bit let down that I didn't get any sort of hint at a diagnosis or direction or anything - just a 'go see someone else.'  It was all so much to take in that I just didn't know how to really talk with her in the productive way I wanted to. 

So despite my positivity in that last post - I doubted.  I just wasn't sure what to do.  I just felt out of balance, uncertain without a direction to lean.  We did start speech therapy with a wonderful woman Jan who does it privately out of her home.  She came highly recommended, has worked in the schools for years, and goes to our church.  She is hands down - amazing.  I love her so much, as does Harper.  We've been going weekly since February.  

The progress Harper has made since then is astounding!  Granted, maturity and natural development probably has helped, but I know the sessions are working.  She went from speaking in mostly vocab words (nouns, non-phrases) to full out sentences with descriptors and pronouns and fun stuff like that.  We noticed very quickly how being able to better communicate cut down on some of her meltdowns.  She didn't jump to immediate rage or despair if she could tell us a little bit better what she needed or wanted.  

The 30 minutes we spend with Jan are very productive, but honestly I think the most helpful thing has been me modeling the way Jan speaks with Harper (and she predicted as much).  I started imitating how she spoke and phrased things and how she asked for more from Harper, and naturally since I spend most of my time with her, I know that's helped immensely.  (So, if I'm talking to you and say "Wahh-ter" instead of "water" like a normal person, that's why).  

So speech has worked out really well.  The other part of the PA's recommendation was to see a developmental pediatrician.  If you've ever traveled down that road, you will know that they are few and far between.  There are 3 that we could find, all in Atlanta, and exactly none of them took our insurance (we have a major carrier, no weird restrictions or anything, but still no).  (Oh, and did I mention we did speech privately because our insurance doesn't cover that either??).

One doctor, the one I thought looked best, has a private practice where you just pay out of pocket, no insurance accepted.  It was going to be $1,500 just for the one-time evaluation alone.  That's a ton of money, but we would absolutely have paid it if we needed to.  It wouldn't have been a second thought. Insert in here too calls to insurance and doctors and etc. etc. etc. It just seemed like a lot.  A lot of money, a lot of time invested, a lot of fuss  - and I just wasn't sure any of it was needed at all.  

But ultimately the complications and hassle are what slowed me down a bit to reflect.  I was so torn - I wanted to be sure to take this seriously, to not ignore something that could be best treated early.  But I didn't want to just rush headlong into this big complicated pricey difficult thing if it wasn't truly needed - and honestly I just wasn't sure if it was.  I couldn't help but wonder if it really was all tied to speech, or if she just needed time to mature, or something else... I just felt so uneasy about it all, in limbo afraid to set out in any direction.  I wanted to trust my mom instinct, and I just felt like we should wait.  Regardless of my desire to find quick answers, I knew that ultimately, she's 2 1/2.  There's plenty of time to take a moment's rest and yet still address it in a timely way.  So we waited.

Speech was going so well, as I said, but we were still seeing so many of the same issues at home.  Improved speech wasn't changing the meltdowns or the quirky things she did or the crazy mood swings.  About 2 months after our initial conversation, I asked her school director for another sit-down to get a status update of sorts.

She was wonderful and outlined in detail what they were (still) seeing at school - all of the things I was seeing at home, but as an educator with years of experience, she was able to communicate this collection of behaviors into cohesive statements that I could take to the pediatrician.  

To give you an idea of what we're talking about here, here are some of the issues we have: - inability to focus on one task for long at all (outside of the normal realm of two year old crazy!) 
-mouthing of objects (her fingers, everything else that exists) 
-swings from rage to joy
-very difficult to settle her back to normal after these swings 
-difficulty with transitions
-constantly in motion, vibrating
-unaware of where her body is compared to objects and other kids

It goes on...  Basically, everything we were still seeing at home, they were still seeing at school. And while speech was improving, it was not solving bigger issues.  Something else was going on. 

Our first meeting, when she first alerted me to all of this, was such a lead weight in my heart - but this meeting left me feeling so hopeful.  I felt like I finally had a direction.  My doubts about possibly waiting it out and waiting for her to mature were gone.  I knew it was something we needed to address.  I was so glad I had waited a few months to let the dust settle, so that with this new information I could feel confident moving forward, not just sped in one questionable direction.  I decided to book a consultation appointment with the pediatrician we usually see who I feel very comfortable with.  This way the entire time would be devoted to this conversation, not just tacked on to the end of a regular visit.

Naturally, from the time of that first meeting with the school director, I had been doing some unhealthy Googling.  How could you not??  I had a hunch that we were seeing some sort of sensory processing issues going on.  Our speech therapist and the school director agreed.  I didn't dive too deep, though, because I didn't want to start rationalizing something that might not be there.  I stressed about the upcoming meeting with the doctor, torn between making sure to be the advocate I needed to be for my daughter, while also not coming across as knowing more than the trained professional, just because I had searched a few things.  

And labels.  Oh labels.  Anyone in an education field knows all about them - the good, the bad... I had learned so much about them in my grad courses.  On one hand, I worried about putting a label on something that could just be immaturity or just a difference in personality or behavior.  Why go about with the intention of labeling your child as different, just to ease your own mind??  But I also desperately wanted the doctor to give us a label - to put a name on this collection of differences that would help us have a direction to go in.  How can you work on helping something if it's so ambiguous and amorphous?  A diagnosis would reassure Tony and I that yes, something was going on, and yes, something could be done. Otherwise, we would just have these random things occurring with no clear path.  I worried too that the doctor would simply repeat that we should see the developmental pediatrician.  

So I worked myself all up and we went to the appointment and our doctor was fantastic.  She listened.  She understood.  She gave me answers as best she could.  She agreed with Dr. Google that indeed Harper was showing signs of a sensory processing issue.  

{{{side note here - I'm totally in the very infant stages of researching all of this.  I don't really know what I'm talking about at all.  So take everything here with that bucket of salt}}}

As I already knew, there is a HUGE spectrum of how these sensory issues manifest.  Kids can range from hypersensitive (where the stimuli they receive from the environment is too much) to hyposensitive (where they don't get the right amount of input that their brain needs to process external stimuli) (this is where Harper falls).  Most kids have certain issues with sensory areas at some point in their lives, but some kids have lots that add up to Sensory Processing Disorder.  

From what I've gathered, the full disorder is fairly disruptive to the child's daily life.  I'm not sure at this point if Harper does indeed have the full disorder or if she simply has sensory processing challenges.  My uninformed opinion is that she does not have what would qualify as the full disorder, but simply the challenges.  Our doctor believes that Occupational Therapy would help Harper greatly.  She officially diagnosed her with SPD and Developmental Coordination Disorder, but she did caution that she used the more extreme diagnoses, since often for insurance to cover OT, these diagnoses must be present.  And to my relief, the doctor said that she doesn't believe we need to go through the whole process of seeing a developmental pediatrician at this time.  She wants us to give OT a try for a while, and if we aren't seeing improvement after that, then it would be time to take it higher up the ladder.  I trust in her confidence on this one.

I was telling some friends about all of this, and one said "it sounds made up."  She didn't mean it maliciously, and it's so true.  It does sound made up.  To someone on the outside it seems like a modern made-up thing because we are all so overly concerned about everything.  I keep thinking in my head of an analogy with it and a gluten intolerance.  'Oh, you're gluten intolerant?? You and everyone else in the American middle class all of the sudden.'  Until you actually eliminate wheat and realize that you truly feel better... and then it doesn't seem so made up anymore.  (ok, stupid analogy I know, but hopefully that kind of helps?)

I found a sensory processing checklist on the website for the facility where we will be doing OT.  It may as well have had a little picture of Harper's face next to every. single. bullet point.  The checklist was describing her.  From pushes too hard with crayons, to "walking doesn't work," to clumsy, to too rough - it was her.  And the more I look into it, the more I am convinced that we are on the right track.

So, your proprioceptive system is a system of your body that takes in stimuli from the outside world as a way to orient your body in space.  It helps us know how to walk through doors and not trip on things and leave space between ourselves and others - all without us having to think consciously about it.  Kids with sensory processing issues relating to the proprioceptive system don't get these clues as readily.  As a result, they are usually always moving, touching, chewing, all as a way to try to get those signals their brains need.  

Harper breaks all of our crayons while coloring (and eats them).  She has always been too rough with Quinn or the pets, even when she's being nice.  She is always the loudest kid around.  She touches everything.  She's almost three, but I have to constantly take things out of her mouth, things she should know not to eat (I can't leave rubberbands in her hair during naps or she will eat them/choke on them).  She loves making messes, squishing yogurt between her fingers or pouring water all over everything.  She literally vibrates when she's excited or upset.  She has sucked on her fingers since the day she was born and it's much, much more than a comfort habit.  She falls down - a lot! (the bruises, oh the bruises!) She is often bumping into other kids or getting too close.  She can't focus long enough to do independent tasks like brush her teeth or dress herself.  She has to touch everything at the store, making it nearly impossible to let her just walk, without us going crazy trying to keep her from wrecking the place.  Transitions from one activity to the next, especially leaving a place or saying goodbye to anyone, has always been extremely difficult.

As you can see, all of the above could easily fall into "behavior" issues.  As a society, we place expectations on our kids to walk quietly, not touch, be gentle, keep dirty things out of their mouths, and not make too big of a mess.  Kids who do otherwise are seen as acting naughty - or more so, their parents are bad parents who lack discipline or attention.  You can see how these sorts of issues complicate the life of a toddler, but you can really see how they can complicate the life of a kid in a normal school setting who is working on learning in class, making friends, and all of the other nuances of growing up.

I don't want to give any indication that Tony and I are perfect parents, but we certainly are trying our very best.  Even in my deepest mom-guilt moments, I know I am doing the best I can with the knowledge and tools that I have at this moment.  As much as it's hard to separate these issues from behavior issues, it just has to be done.  Typical parenting solutions to "fix" behavior problems haven't worked.  And now we know why.

Tony and I have talked about how we want to just shout out to all of the people staring at our kid having a meltdown in some public place - It's NOT us!  It's NOT her!  She cannot help it!!   It's one of those invisible things.

We had lunch on Mother's Day at a very kid-friendly pizza place, but there was a big family without kids sitting near us.  When we went to leave, Harper threw her expected and unfortunately quite common fit about not wanting to go.  She threw herself to the booth, kicking and screaming.  Tony picked her up and took her out while I packed up our stuff and Quinn.  I caught the table staring at us, as a hush fell over their conversations... I just wanted to turn to them and shout - you don't understand!  save your judgement! Let me take 10 minutes to explain this complicated business to you so you will be more empathetic... And I just hate it.  

Selfishly I hate the judgement, but less selfishly I just want to wrap Harper up in my arms and block out everything but us.  I don't want her to be judged or misunderstood or made fun of or shunned or whatever nastiness the world out there has for her.  An ugly part of me wants her to be 'normal,' not for my sake or normal's sake, but just so it will be easier.  It's heartbreaking and frustrating.

Anyway, back to the doctor. She prescribed Physical Therapy and Occupational Therapy.  We got the PT evaluation, and she did wonderfully.  So no need for PT.  The reason she struggles to do some things has nothing to do with her body being physically able to do it.  Instead, it's the much trickier brain/body connection.  Sensory issues are often seen in children with autism, but our doctor did not see signs of that.  Sensory issues can and do exist independently.  As I've said, there's a huge range of how these issues present themselves, which sense they affect, and how severely.  I'm thanking God daily that it seems like we are on the lower end of severity and only certain senses seem to be affected.  There are certainly much more challenging things.

Our next step is to start Occupational Therapy, which is the method of choice for helping kids with sensory issues.  At this early stage, I'm not even sure how exactly they do it.  I do know it involves play and movement in a way that helps reset the brain.  Things like spinning and hanging upside down and brushing the skin and deep pressure hugs.  I'm just not sure at this point.

We are on the wait list at a local place that comes highly recommended - my hope is we will start in June.  Somehow, this is actually covered by our insurance (but still likely won't be cheap!).   I'm mostly so excited for a professional to evaluate Harper individually, and be able to let me know exactly what she struggles with and how we can begin helping her specifically.  I've felt a bit guilty lately about not doing more research on my own.  Shouldn't I be out there scouring everything there is to read about SPD and implementing my own therapy at home while we wait?  But the problem is, there's so much variation.  There's no how-to blanket guide.  Many of the sites out there focus on the full disorder, and often on the hypersensitive kids, not the hypo ones.  I need to keep looking.  But mostly I just want a more customized evaluation before I start down those trails.  Thank goodness for qualified, kind professionals.

While all of this may seem a bit negative, we really do have a positive attitude about the whole thing.  We have a direction to go in.  We might not have all of the answers, but we're working on it.  I'm trying my hardest to not see this as a problem in need of fixing, and instead see it as part of her unique and perfect self.  

We are going to get her the help she needs to make life a little bit easier, but I don't want her to ever think we resent the fact that her brain works a little differently.  As I said last time, for all of the negatives this seems to be causing, it's also created her BIG personality that I just love so very much.  Harper's never met a stranger.  She's boisterous and FUN and gets carried away laughing.  She loves getting tickles and wrestling and giving hard hugs.  She is the "classroom greeter" of all the kids at school - and even knows who their mommas are when they come to pick them up.  She loves so deeply and she is so stinking smart.  I wouldn't ever change a single thing about her.  God created this perfectly unique child just for us, and we are learning and growing every day because of her.  She is making us better parents, better people.  

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