Joy, what am I going to do with you?

Joy, you are a sweet, kind, loveable, ornery, stubborn, Down syndrome princess.  We adore you. 

But Joy, what am I going to do with you?  Your sedated ABR could not be completed because you were so stubborn, you refused to fall asleep.  They gave you the most medication they could in an outpatient setting, and other than being groggy, you would not sleep!  So now they want to send you to the hospital under general anesthesia to have it done.  I would feel more comfortable with them doing that down at TCH.   But I am very disappointed in how the office staff and doctor don’t communicate with me or each other, so I am thinking of taking you down town to Texas Children’s anyway for a new ENT.  Unfortunately, that would set us back several months.

And then there is school.  You have been so good about learning the routine  - you are quite OCD about routines to be honest.  You had been doing so well about not scratching.  Then the phone call came today.  You manhandled four kids today.  There was no blood, thank goodness.  You were just very possessive of one piece of outdoor play equipment.  There are twelve children and two teachers.  Perhaps the teacher is right.  Perhaps you need more individualized attention.  Or maybe you are sick.  Maybe your ears are bothering you.  Hard to tell.  You don’t tell me when you hurt.  Maybe public school would be best where there are teachers with special ed backgrounds.  But my heart hurts to think of sending my non-verbal little girl off to a strange place all day long.  Don’t I have a special ed and early childhood background?  What is the right answer for you little one?