In the mail

In yesterday's mail, I received two things. First, a mysterious sheet of paper from an anonymous sender (I suspect it's from one of two people) with a handwritten note directing me to this website: http://members.tripod.com/~suj_2/index.html . Still trying to figure this one out. It's the website of a young man with DS, but there are lots of them out there, so I'm not sure what the significance of this particular one is.

The second thing in the mail was the IFSP (Individualized Family Service Plan) for Finn from Regional Center. It contains, among other things, the results of the initial assessment done on him when he was 3 weeks old, as well as goals for him to achieve by the time he's 12 months old.

I know I should look at this stuff with a somewhat objective eye. But it's hard - really hard. Hard to not take it personally, not to get all up in arms (well, hard at least for me; Michael seems fine with it and reminds me as I'm ranting and raving that "They have to start somewhere." I know he's right, but still.) It's silly, really. Here's a breakdown of the assessment done on Finn at 3 weeks of age:

Gross Motor (e.g., lifting head, rolling, crawling, pull to stand)
Skill Level: 1 month
Comments: Finnian is making equal movements with his arms and legs and can lift his head up when on his mother's shoulder and has started to lift his head when placed on his stomach. Mother reports that Finnian has rolled over 3 times. (Read: mother is either crazy or full of crap.)

Fine Motor (e.g., grasping, holding)
Skill Level: Newborn (Huh? What's the actual difference in skill level between "newborn" and "1 month"? Does this translate into a "delay" or is this skill level typical for a 3-week old baby?)
Comments: Finnian is able to follow to mid line but not past mid line. (I have no idea what this means or what it's referring to, but I can't help but focus in on the negative language, "but not past . . . ." Again, does this translate into a delay already at 3 weeks of age?)

Communication/Receptive (e.g., turn toward voice consistently)
Skill Level: Newborn (Again, is this a delay, or is "newborn" skill level typical for any baby of 3 weeks?)
Comments: Finnian responds to the sound of a bell.

Communication/Expressive (e.g., imitate single words, use motion or gestures for talking, verbally identify objects)
Skill Level: Newborn
Comments: Finnian is not yet vocalizing (Should he have been vocalizing yet?)

Social/Emotional (e.g., how the child relates to others)
Skill Level: Newborn (There's that word again . . .)
Comments: He is able to regard faces but is not smiling responsively yet.

Adaptive/Self-Help (e.g., sleeping, eating, dressing)
Skill Level: 1 month (???)
Comments: He is breast feeding currently every 2 - 3 hours, sleeps well and enjoys his bath.

So, the part that confuses/concerns me is the distinguishment between the skill level of "newborn" and "1 month." Is he delayed, or is he advanced? Or is he typical/average? And why do I care so much? Why does this feel so much like a pass or fail test? Am I allowing my ego to get involved here? Am I at least in part seeing this as some sort of reflection on me as his mother? And I can't help but feel disturbed by the fact that this stranger came into our house and spent about 15 minutes observing Finn and in that brief amount of time was supposedly able to reduce him to these few lines typed up on a form. I want to defend him. I want to call her up and tell her "He's more than this! You don't even know him!"

I guess it scares me. With all my recent talk of optimism and hope and high expectations for Finn, I'm scared. I probably always will be to some degree. These papers make it all real, the fact that he's "disabled." The fact that he's expected to be developmentally delayed. And I know he's still so young - not even two months old yet - and it will be as he gets older that whatever delays he has will become more and more apparent. That's what scares me - facing that. It's easy to pretend that he's just a normal baby right now, but that's not always going to be the case.

I can't help but think about Sarah Palin (and this has NOTHING to do with politics - I will keep my political views to myself, thank you very much). A prominent, successful woman who is facing many of the same issues I am facing - raising a houseful of kids, and one of them with Down syndrome. And I keep telling myself, if she can face this with grace and courage, then so can I. But who knows what goes on behind her closed doors? Does she cry sometimes? She must. Does she feel scared? She must. Has she felt her heart breaking a hundred times already since her baby was born? She must have.