Tuesday, May 10, 2011

The Thick and Thin Of It All

After some perusal today, I found that I had never blogged about our second and most accurate diagnosis of Hayden's behavior.  It came to my attention in reviewing my very first post of this blog.  We seemed (or rather, I seemed) quite content with partial and ambiguous results from the testing Hayden underwent back in September.  Since then, Kelly has said, "That was a waste of time and money."  And while I usually don't agree with his negative view on crap-tastic situations, it kind of was.  What it did do was help he and I to face the dreaded "A" word and begin to accept what was recently confirmed:  Our daughter has autism.

This time, we said the words, "We want her tested for AUTISM."  Our ambiguity in what we asked for the first time may explain why we were given an ambiguous result.  Sometimes, a psychologist operates under the axiom that to label is to doom a child to a fate worse than death...if you'll pardon the hyperbole.  Nevertheless, we were unsatisfied the first time because deep down, we knew.  We had begun to walk that road of realization and acceptance the minute we considered testing at all.  And left with no more clarity than what we had started with, we knew we weren't finished.  We had to wait, however, because of the cost.

To go into the lengthy details of how we were finally able to obtain the 2nd diagnosis would be an exercise in misery for you, our readers, because it involved a whole lot of insurance BS.  Suffice it to say that at the last minute, we qualified for Sooner care (which, for those of you who are not familiar w/ OK, is Oklahoma state-paid Medicaid).  Sooner care covers the cost of testing for autism and other psychological and neurological issues so being accepted meant that they (eventually) footed the bill and we were in.

Hayden's testing was to cover three days:  Day 1 was a parent interview.  Day 2 was to be testing.  And Day 3 was a final parent heart-to-heart.  This was good news to us because the last time  had spanned an entire month and four or five different sessions--all a ginormous pain in the ass. Day 1 went well.  The psychologist was receptive to what we said, agreed with our concern based on her evaluation of what has become the novel of paperwork that makes up Hayden's file, and laid out the game plan.

The first day of testing was a week later.  And it was just awful.  Firstly, upon entering the office, the door to the play therapy room was wide open and in plain sight of the main office door.  Hayden wrenched her hand away from me, making a bee-line to all the toys within that room.  Kelly intercepted her and tried to point her in the direction of the toy castle in the waiting room while I tried to check us in.  She got away from him and took off down the hallway of the office.  As I was just starting to panic, someone who worked there told us that there was another waiting room at the end of the hallway and that it was OK for us to go there, too.  Kelly went after her and I heard no wailing or screaming so I figured everything was alright.
Upon joining my family in waiting room #2, I thought we were saved by the TV/DVD player in the corner.  We both calmed down even more when we discovered a Cars DVD in the thing and let it start playing.

Lulled into a short-lived sense of relief, we were side-swiped when a mom, dad, and little boy with grandma and grandpa in-tow crowded the room and started having a rather loud conversation.  Loudness tends to, first, key Hayden up to activity of very hyper proportions and makes any boundaries that she might even remotely be aware of, disappear entirely.  She alternated between running up the the parents and grandparents, snuggling next to the boy, running down the hall into a PT room and jumping on the equipment therein, rolling on the floor, bouncing on the couch, and generally causing Kelly and I to want to sit on her until it was our turn.  After the key-up, though, comes her inability to calm down and then any trigger will push her over the edge into a meltdown.

That came for us when the psychologist came to get us to begin our session.  She had returned to watching Cars for a couple of minutes just prior to this and was not at all cool with leaving it to go to a doctor's office.  She started panicking as the doctor's office is probably her least favorite place.  So, to keep track, she had already been disappointed by being torn away from what looked like a perfectly good play room; she was keyed up by the Loudy-McLoudertons; she was peeved at leaving Cars; and she was starting to panic because this looked an awful lot like the place to which I drag her to get "one-two-three pinches."

Finally sequestered in the little office, there was a 20-30 minute meltdown of unseen proportions--luckily, Hayden does not get destructive so much as she is loud.  But we did have to go to the bathroom to "calm down" where I proceeded to lose it which only made her more upset.  In trying to calm her down, I sprinkled water in her face to cool her off.  Though, sprinkle is such a nice word.  Not my finest mommy-moment but honesty and transparency are needed here so I will just say it:  I flicked the water on her with much frustration.  Of course, guilt assaulted me at every growl I uttered, at every angry face I made, and the water made me feel like perhaps someone with far more composure than I should just take over being her mom.  And I remembered right after I did it, Hayden's newest sensory issue was being wet while in clothes.  She would get super-upset when this happened and would undress and/or throw a fit until someone produced a change of clothes.  The dumb-ass that I am, practically dumped water on her...to try to calm her down!! *Sigh*

Somehow, we made it back.  And our psychologist was wonderful as Hayden spent the rest of the testing session that day in her panties.  Unfortunately, our little melee caused the psych to recommend that we finish in a 2nd session, which we did.  Going back, I was nervous.  I told my husband that we were staying in the car until the last possible moment so no waiting would get in the way of our focus.  I kept wondering what she would remember.  She was nervous walking into the office but the first thing she said, almost pleadingly, was, "Take off pants?"  That calmed me a bit and this day went much more smoothly but overall was still painstaking.  Hayden doesn't like to test and knows when she's being tested.  So it is very literally like pulling teeth to get from question to question.

The last day was the parent pow-wow.  And it was informative and oddly, a bit of a relief to have it said aloud by a professional who knows:  Hayden has autism.  Her formal diagnosis is Autistic Disorder with Attention Deficit/Hyperactivity traits (Apparently, according to the DSM-IV, one cannot have a co-morbidity of an ASD and ADHD...weird but as she does very obviously have it, they just label it as her having "traits.") She also has the diagnosis of Disruptive Behavior Disorder-Not Otherwise Specified.  The name is almost humorous.  I know that parents, across the land, would give their child this diagnosis in a heartbeat, any other issue or not.  But apparently, this is because of her autism.  And to be perfectly honest, I feel like Day #1 is responsible for this.  And here's why:  I looked it up to see what the big deal was about this.  Apparently, it is behavior that is over and beyond what is considered "typical" for children on the spectrum.  Now, I've read and heard some pretty harrowing tales about furniture being thrown about, parents being hit, bit, smacked, and kicked.  Hayden does none of this.  She is loud.  And calming is a long time in coming.  And at most, she squeezes me in a bear hug and grits her teeth.  But hit, kicked, or bit me?  No.  Thrown furniture?  Thank you Jesus, not at all.  But whatevs.  I figure that in her lifetime, we will revisit her overall diagnosis multiple times and this may very well disappear later.  (Here is a link I found that kind of describes the DBD-NOS.)

So that is how it happened.  I tried to have the "let's prepare ourselves" talk with Kelly before we went in for the final pow-wow session.  But it was not preparation enough as I don't think anything really could have been.  Kelly said, wisely and honestly, "That was a lot harder to hear than I thought it would be."  And it was.  But we also reaffirmed to each other our dedication to love our child fully and accept that God made her perfect, just the way He wanted her.  She is Hayden and we couldn't imagine her any other way.  In our hardest moments and on her most trying days, we struggle with the exasperation and the heartache of, in that moment, wishing she were "normal."  It is gut-wrenching and guilt-encompassing when we do.  But we are not perfect and we can only open ourselves up to allowing God to fill us with His peace and teach us His patience.  She is who she is and we love her exactly that way.

We have learned a wealth of information since last September when our journey began.  And I daresay there's a few more nuggets of knowledge out there that we'll come by.  Not to mention the precarious path of helping Hayden grow up.  A day at a time is all we have and so we'll take it at just that speed.  But we know that we are not alone and we know that we are loved and supported.  And that is what drives us on.  We love you all and hope you're all well.  :)


  1. This was really insightful - glad I read it. I think you are wise beyond your years Jill. And you have confirmed what I already thought I knew about you...you're a wonderful Mom.

  2. Thank you so much, Katy & Susan! :)