Tuesday, July 10, 2012

Adding to the list...

I love lists!  Lists are my friends.  There is the contact list on my phone, which, if lost, would mean the end of my ability to connect with my real friends.  There is the list of books I've read; it makes me feel so impressed with myself when I look at the number of books I've read (I can't admit to it making me smarter or anything; many of the books are pure entertainment and not for enrichment).  Of course, I have to keep the list so I don't forget if I've already a book or not.  I can be very forgetful.  There is the list of books I am planning on reading that feels like a list of mini-vacations, escapes from my daily reality.  I don't even mind my "to do" list.  Even when it is long, there is something remarkably satisfying about crossing things off when tasks are completed.  Granted, sometimes I have to put "take a shower" in the first slot, just so I can feel a sense of accomplishment every day.  No joke.

There is one list that I don't particularly like:  the list of K's diagnoses.  Until last week, we were holding steady at Mixed Receptive/Expressive Language Disorder, Auditory Processing Disorder, and Sensory Processing Disorder.  We have spent countless hours in evaluations and therapy over many, many years to work with these issues.  We have spent countless hours ruling out other things, as well.  That was all well and good.  I felt like I had a pretty good handle on my girl and how to help her and we've been moving along with positive, albeit slow, progress.  Until last week...

After her bout with anxiety in the end of May, our pediatrician wanted her seen by a child psychiatrist.  That appointment was a week ago.  The result?  More things to add to the list.  His certain diagnosis is Obsessive/Compulsive Disorder (OCD).  Possible additions are generalized anxiety disorder - a likely addition, actually - and he won't rule out autism spectrum or ADD.  Really???  We've had K evaluated for both of those on numerous occasions and thought we had laid those to rest.

I don't love this list.  I find this list to be overwhelming, both emotionally and mentally.  I can't speak for other special needs parents, but for me, situations like this can overwhelm me into complete inaction.  In other words, I know I need to be calling the insurance for a list of providers to get K into cognitive behavioral therapy for the OCD.  It took me 3 days to make that call.  Once I got the list, it took me 2 days to call even one person.  I left messages for 2 and have yet to make any more calls (although it is on my to do list for today).  Yes, I know I need to get this done because K needs it.  I understand that waiting around doesn't help her.  I get this, but still, there is some part of me that hopes that if I ignore it, it will just go away.

It won't.  I know this.  I will suck it up and make the calls, even though I really don't want to do it.  It makes the situation real and permanent - another something that I, as her mother, can't fix for her.  I can't kiss it and make it better.  All I can do is put the pieces in place and make sure she gets to the appointments so someone else can fix it.  Most of the time, I can accept that by doing that, I am doing everything that I can do for her.  For now, though, it is just simply overwhelming and leaves me fighting those feelings of inadequacy and guilt - wasted emotions, I know, but they are still lurking beneath the surface anyway.

I know there will be people who read this who won't understand why I just don't get on with it - make the calls, make the appointment.  I don't think I can adequately explain why that isn't as easy as it sounds except to say that situations like this do not have a "quick fix" so if it takes me a little bit longer to deal with it, then so be it.  K will get what she needs.  I am doing the best I can, even if it is not the same "best" as somebody else.

So, our journey continues with a new bump in the road.  I trust that something meaningful will result from this bump; that there will be some new life lesson learned.  I will have to focus on the positive possibilities so I don't get bogged down in the daily difficulties.  With all that K works through, can you imagine the possibilities for her as an adult?  If we are built out of our life experiences, she will have a breadth of self-understanding and a depth of skills and tools that most adults can't even begin to access. We may be in the trenches right now, but the payoff in the future has unlimited possibilities!

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