October 18, 2014

October 2014: Sensory Awareness Month (and what it means to my family now)

It's 3:11am and I just can't sleep.  I"ve been awake since 7am, yesterday morning.  I just can't turn my mind off tonight... so much to sift through...

Last week, KJ was diagnosed with Sensory Processing Disorder (SPD).

M y   K J   h a s   S P D.  (and "highly suspected Aspergers")

I'm pretty sure none of this has sunk in, for me, yet.  Because if it had, I wouldn't still feel light headed, nervous, anxious, sad, and very confused every time I'm reminded of the realities we are facing . . . would I?  I mean, having the "official diagnoses", of SPD, doesn't change much around here.  Life still goes on as it did before the diagnoses (with major modifications on the parental side).  Our KJ is still "our little KJ".  It did, however, bring a huge sense of relief.  Really.  It confirmed my 'mommy intuitions'.

The heartbreaking part, for me, is that there's not a "quick fix".  There's nothing we can do to make it all "go away".  We can only learn how to make the best of every situation we are faced with along the way.  We can help her learn new ways to work through her moments.  And we can most definitely love her completely and unconditionally.

She started occupational therapy (OT), two times a week, for SPD, this past week, and she has been referred to a neuro-psychiatrist -for further testing, by her new pediatrician.   Unfortunately, her psych evals aren't until January!  So, we won't get an 'official' answer on the aspergers diagnosis for what feels like a VERY long time.   I've suspected aspergers since she was five, and by all means, I could be completely wrong.  BUT I definitely was not shocked in any way when the doc told me that it all seems to be pointing to aspergers.  So, waiting a few more months is nothing compared to all the years we were  hushed/calmed/disregarded, and told "it's just a phase", "give it some time", "she's just being defiant child", "She can't have aspergers... she communicates and makes eye contact well.  . . . She's fine.",  by her previous pediatrician.  Of course, I've never wanted her " labeled" in any way.  But, I've just known there's a LOT more going on than just "typical behaviors".

It's been tough -emotionally, mentally, physically.  As a mom, we always want our children to move through life's phases with only great memories.  And, this whole week, I've really been struggling with my thoughts, wondering what kind of memories she will have...  I've gone through so many different thoughts and emotions.  I have been in constant prayer because I'm having such a hard time moving past the "I wish I would have fought harder for her, sooner.",  "why did I let so much time go by?"  "is it something I did?"  "I could have been doing things differently a lot sooner, if I would have known..."...

I just keep thinking, "So, it's not that she likes to push our buttons just to get our reaction? . . . she really  doesn't know how to do things differently?  It's not just that she doesn't care??"

I just have so many feelings over all of this:  guilt.  heartache.  frustration.  guilt.  relief.  thankfulness.  guilt.  guilt.  guilt. ...

I know, I know.  The pedi, on Tuesday, so kindly heard all my concerns and all that I've done over the years trying everything I could think of to move past these hurdles; and then very sincerely, after I choked up and said how I just keep thinking, "W h a t   a m   I   d o i n g   w r o n g??", Dr. B told me that it's nothing I am, or have been, doing wrong.  And I keep reading it as I've been researching all that I can, on SPD and Aspergers.

So, this is our new chapter right now.  I'm trusting God every step of the way --even though, I've had to re-give it to Him many, many, times this week.  I keep taking it back and questioning everything... and then I remember "Oh, right.  I've been praying for answers and the right care providers, so I just have to trust right now..."  Not easy, dear friends.  But we are taking it one   m o m e n t   at a time.

Here are some links to help spread awareness of SPD and Aspergers.  (coincidentally, October is Sensory Awareness Month, which means there is quite a bit of info and support (a little easier to find) right now.)

About SPD:  http://spdfoundation.net/about-sensory-processing-disorder.html

This article explains what it's like to have SPD:  http://comingtosenses.blogspot.com/2014/10/the-neurotypicals-guide-to-adults-with.html

What is Aspergers?

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