Thursday, March 31, 2011

Easier Said Than Done

Tuesday we traveled to our all day long Scottish Rite appointment for Autumn.

All. Day. Long.

We sat in one room for several hours while different doctors, nursers, therapists, and dieticians paraded in and out giving us their opinions on all things Autumn.

It was exhausting.

Per the usual, I went prepared with a list of questions and concerns I wanted to discuss.  Autumn has been exhibiting several behaviors that worry me.  She is having near consistent nightmares.  She will be sound asleep and scream and thrash.  This sort of scary thing happens three to five nights a week.  Aside from that, Autumn does not eat much.  I have been assured that she will "eat when she is hungry," however, this phase seems to not be passing and has lasted four months thus far.  She also has a tiny attention span and gets very frustrated very quickly.

Now, to most parents this might not seem "worry worthy."  Given Autumn's drug exposure at birth, we prefer to be cautious and proactive.  We are aware of how very lucky we are that she is as healthy as she is.  Drug exposure can present itself in many different stages in life, and we just want to make sure we are not seeing complications that can be treated.

On this particular day the doctors were being very vague.  They gave us several options for the nightmares, one being night time seizures. 

No. Thank. You!

We were instructed to do a ten day sleep log without the help of her Melatonin.  Oh what fun!!  We were also instructed to fill out several questionnaires regarding her behaviors.  We left Scottish Rite feeling more confused and frustrated than we had felt walking in. 

All the way home I replayed the conversations in my head.  They were implying something I could not pinpoint.  I went over each and every answer to every question.  The doctors have never been this vague before.

What did they think was going on?

Once home, I immediately retrieved the questionnaires and started to fill them out.  That's when it hit me like a ton of bricks. 


They think she is Autistic!

Don't misunderstand, this diagnosis does not scare me.  I just do not think it is appropriate for Autumn.  I think she exhibits many qualities of having Sensory Processing Disorders, which thanks to our wonderful Occupational Therapist we are being evaluated for as of now.  I just think they are taking some of her behaviors out of the context related to her medical issues.  In regards to her eating, I am more concerned it is sensory or even surgery related.  Our sweet girl had three surgeries involving repairing and removing parts of her intestines in the first four months of her life. 

This is not something they are concerned with!!

All in all, I am sure we will have a new "developmental" diagnosis within the next two weeks. 

In all honesty, I'm not entirely sure how I feel about this.

Is it too early to diagnosis?
Are we being proactive by taking precautionary measures?

It also brings up mixed emotions I haven't felt in a while.  When you have special needs children, you mourn the loss of something.  With Autumn, it has always been physical.  She won't walk.  Pure and simple. I have mourned the loss of her dancing at her prom or walking conventionally down the aisle.  I have dealt with how to explain his disAbilities to her friends at school and to herself  Cognitive impairment is new.  New is scary. 

Even as I type this, my sweet girl is playing with her toys and laughing at "Yo Gabba Gabba."  It breaks my heart to know she may have to go through more than her fair share. 

I have no doubt she will deal with whatever is thrown at her with spunk, grace, and humor.  I have no doubt she will take her weaknesses and turn them into unbelievable strengths. 

This is purely a "Mommy" issue. 

I am having to grieve and mourn again.  It saddens me and puts an ache in my heart.  I can tell newly diagnosed parents all about grieving.  I can paint a beautiful picture full of hope and laughter.  I can share inspirational stories and impress the importance of support and encouragement. 

It just goes to show .......   Easier Said Than Done!

So please stay tuned to find out the chilling conclusion to the conundrum that is Autumn.

Same bat time...Same bat channel!

In the meantime......how cute is she??

1 comment:

  1. It sounds a bit like what we've gone through with our little drug exposed boy! He's much better now.

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