Uncharted Waters

No matter the doctor there is always a form given asking basic "get to know you" questions.  Since Sonya is not 18, I am obviously the one who fills out her questionnaires.  What's her gender? Female.  Is she married or single? Single.  Is she Caucasian, African American, Non-Hispanic, or Pacific Islander? Caucasian.  I am always writing our address, emergency contact information, and phone number.  At the hospital they even ask for religious preference.  All of these questions result in answers that require no more thought to answer than the time it took for me to read them.  

The next section requires me to tell them the developmental history of Sonzee.  Is she sitting? No.  Does she roll front to back? Yes.  Does she roll back to front? No.  Does she roll side to side? No.  Can she tripod sit? No.  Is she crawling? No.  Does she coo? Yes.  Does she track objects visually? No.  There is always the same question that I feel requires more than a yes/no answer.  Does she have her social smile?  Well, if you mean does she smile if someone looks at her and does not talk then no, not really.  But if she hears a high pitch voice talking to her then yes; and if a person is blind then of course it would be considered a social smile if the child responded to a voice....right? 

To me anyone who would read her patient intake forms would have a fairly good idea that Sonzee is not typically developing.  She is doing an amazing job considering, but by no means would I want her "judged" against her same age peers.  However, I don't have her forms on display when we are at swim, at the store, or out in public.  

Lately, I have noticed the sideway glances of other parents in her swim classes giving her that extra look over.  The parents who look at Sonya and then look at their child, and know something is just not "kosher".  Sometimes I feel like they think to themselves "I wonder if her parents know".    

Yes, We do.

I am new to these uncharted waters.  While I wish they would just ask, I know most people don't know that they can.  Do I just tell them?  Do they really want to know?  How much information is appropriate to share?  Do I just hand them her "CDKL5 card" and tell them to follow her story?  I just don't know the proper etiquette for these types of situations.  I still haven't wrapped my head around the fact that I will have to deal with these situations forever.  That this IS my new TYPICAL.  That no matter how typical she looks on the outside...she is just NOT on the inside.  Still daily I find myself getting winded at the realization that no matter how many therapies she partakes in, she won't be ever be typical.  She might be "close", but she won't be like her siblings.  While I tell myself I am okay with that...I guess I still haven't crossed into acceptance.