"From the rising of the sun to the place where it sets, the name of the Lord is to be praised." Psalm 113:3

Friday, September 23, 2011

Firefly Friday. What SPD Means to Us.

SPD.  Sensory Processing Disorder.  It is only a piece of Firefly's puzzle, but it is the largest piece, and the piece that makes all of the others harder to fit.  Most of her other "issues" can be traced back to this one, probably because she (as her psychologist has told us) has "the worst case I've ever seen."  Yay for us!

So, what exactly is SPD?  Wikipedia defines it as "a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body (visualauditorytactileolfactiongustatoryvestibular and proprioception).

For those with SPD, sensory information may be sensed and perceived in a way that is different from most other people."

Wow.  That's clear.  Makes perfect sense now, doesn't it?  I think that's part of what's made things so hard when I try to explain SPD to others:  coaches, friend's parents, family members, neighbors.  (And by the way, that's a topic for another post--Who, exactly, needs to know this about my child?)  I can't even explain it correctly to Turtle, much less opening that door to Firefly herself.  (And yet another post--to disclose or not disclose a diagnosis to my child.  Man, I could be writing for days, here!)

So, here, I'm going to clarify.  Help to make clear what SPD means in our lives, for our family.  Maybe it will strike a chord with some of you out there and you can help me "educate" / "spread the word" / whatever.  Because I'm kind of struggling, and it seems to me that we've had to explain a lot lately.

This Is SPD.

A neurological disorder.  It is real.  It is invisible.  And can I say it again?  It is real.  I did not make it up.  It is real and Firefly has really been diagnosed with it.  Yes, I know you do not see her act out.  Yes, I know you do not believe my stories.  Consider yourself lucky that you have the luxury to think that I am making things up.  I wish I were.
Again, a neurological disorder.  This means that it is in her brain, not in her parenting.  Not in her manipulating behavior.  It is in her brain and she was probably born with it.  She will always have it.  You can't see it on her face or in a missing limb or in the use of a wheelchair.  It is, though, a disability all the same.
It causes difficulty taking in, processing, and responding to sensory information from outside and *within her own body*.  Know what that means?  I could expend a million dollars, man-hours, and brain cells trying to control her environment, and she could still have a falling-down, screaming tantrum.  As a matter of fact, that happens more often than not (except for the million dollar part!)  Once I was so frustrated that I called the newest doctor we had found, yelling and sobbing and pulling my hair out.  "I don't understand WHAT could be going on!"  "Well, it's cold outside."  Are you kidding me?!  As a control freak, Type A Mommy, this stuff is pretty hard to take.
It causes sensory information to be sensed and perceived in a way that is different from most other people.  Understatement of the year, that one.  Do you know that seams in our socks actually feel like acid being poured onto feet?  And seatbelts?  Prison.  How about scalding bath water that makes her little brother scream?  Perfectly comfortable.
The tricky thing about this, though, is that it can change on a daily hourly basis.  So just when you think you've got it figured out, the game all changes.  (Remember my control freak, Type A tendencies?  Yeah, works great here, too!)
SPD means that we don't go on a field trip without an exit plan and the guts to use it--immediately.
It means that we don't go to see movies in the theater, unless it is a super, super, I've-been-begged-by-the-others-until-I-can't-make-any-more-excuses thing.  When that happens, we are the family in the theater with ear plugs and sunglasses.  (And an escape plan).
It means we also take our sunglasses to the dentist.
It means late hours every night putting together a schedule, and praying that we don't have to make a last minute change to it.
It means that we are that family that really, really needs you to stick to your plans.  I understand that that doesn't always happen.  She doesn't.
It means that we don't do so many play dates.  And when we do, I am in desperate need of a "happy pill" or a cocktail when it is over.  That's why we only make small play dates, in case you were wondering.  It's also why we tend to make them in another location besides our home.
It means that cutting and writing can actually be painful.
It means that I think that seamless socks, truly seamless, and tagless t-shirts are man's greatest inventions.  (Except for maybe earplugs and sunglasses--oh yeah, and gum!)

It means that I wonder on an everyday basis if my daughter will always and forever eat everything with her fingers.
It means countless hours in the car traveling to therapies, countless minutes in waiting rooms, countless nights spent wondering which therapies actually help and which ones could help that we haven't tried yet.
It also means we could have bought a small house for what we have spent on said therapies.
It means that every time we try a new thing I have to wonder if I need to let the "adult in charge" know "all about her".
It means many incidents that I am not proud of when I can't figure her out and can't stop her meltdowns and I lose it myself.
It means that she can't see the shorts that she needs to put on, even when they are right.in.front.of.her.
It means that I can read her a page of a book and she immediately can't remember it.  (Well, in fairness I don't know if that's the SPD.  But it is incredibly frustrating.)
It means that her baseline anxiety is so high just in getting through the day that anything else unexpectedly thrown at her (say, like a thunderstorm) will send her over the edge.
It means tears, for her, for her siblings, for us as her parents.  Almost every day.  Like yesterday, from me, in the psychologist's office.  Sobs, actually, although I'm not proud of it.
It means being questioned by a pharmacist about why I am the kind of parent that puts my 6 year-old on anxiety medication.
It means endless hours of wondering why I am that kind of parent.
It means the four-hour car rides to visit my father with Alzheimer's Disease don't happen as much as I want them to.
It means that she can't eat the same birthday cake that all of her friends do.
It means that she is the only one on her soccer team to NOT spend the night at a friend's birthday party.
There are so, so, so many other "negatives".  It's so easy to dwell on them--too easy, really.  It affects almost every.single.piece.of.our.lives.  But you know what?  
It also means that the quiet minutes Firefly spends spontaneously reading to her brother are priceless.
It means that the exceptional athletic ability that she seems to have is a gift from God, and the fact that she can grasp and understand the concepts of a team sport is another gift.
It means that I still have an eight-year-old, almost nine, who still "really needs" to hold my hand all the time.
It means that those times that we are able to push the tantrum away are exquisitely wonderful.
It means that we take great pride in her learning to use her words to tell us that she "doesn't feel good", or "it's too loud".
It means that she is an incredibly loving, sensitive (I'm using this in the *good* way, this time), sweet little girl who looks out for others.
It means that I have learned to pray.
It means that I have had some really, really good crying-it-out times.
It means that we all eat healthier.
It means that we homeschool, which has been a huge blessing to us.
It means that I have become a better person (well, sometimes).
It means that I have gotten closer to my husband, and to God.
It means that we've discovered that sometimes a warm (OK, boiling hot) bath can fix anything.
It means that I still get to read to her.
It means that my four year-old is learning empathy and how to look out for others.
It means that we have made true friends who we can trust to adapt with us, or to listen to me rant when it's needed.
It means that we get to have cool toys in our house like yoga tapes, trampolines, weighted blankets, therapy balls, and pull-up bars.
It means that I get to say no to outside committments sometimes.
It means that we can slow down.
It means that what looks like an ordinary day to others is a great, wonderful blessing to us.
It means that I can see God sending others to touch us, to help us, and to encourage us.
Would I trade it?  Wow.  Loaded question.  And one I am too emotional to answer.  But I do know that  it helps to focus on the gifts that SPD has given us.  It is what it is.  That has become our catchphrase, along with "I can do all things through God who gives me strength."  And, to me, finding that strength seems to be worth what we've gone through to need it.


4 comments:

  1. This is beautiful. I know that you poured your heart into this as you do into everyday. You have always been one of my favorite people. This just makes me love you more! Thank you for sharing. I get bits and pieces of it. ;) Prayers for you and your wonderful family.

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  2. Great post. It can be hard to focus on the wonderful qualities of these sensational kids. Saw your blog on Planet Weidknecht. Thanks for sharing. You have a new follower.

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  3. Hi this is Nicole from Colie’s Kitchen I just discovered your blog and wanted to drop by and say hi. I am now a new follower. I would love to have you stop by Colie’s Kitchen if you get a chance. www.colieskitchen.com

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  4. Thanks for linking up with us at the Sit and Relax hop. I haven't been here in a while. I love that you can look at the good that comes from this, because I know it has to be frustrating. Just remember, God doesn't give us more than we can handle. (I wish a lot of times he trusted me less!) I'll be praying for you guys.

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