Sunday, August 31, 2008

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: . 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.


Karly said...

IEPs suck...the ones at the end of the year are even worse. I wish they would just categorize things in skill sets rather than age groups. And you are right, the newborn vs. 1 MO thing is really confusing.

Hang in there. It is really hard to see the value of intervention when they are just babies, but overall it will be a good thing.

Laurie said...

Oh Lisa. I am right there with you. I really am...and therefore I have zero words of wisdom to share.
Thinking of you!

Cindy said...

Lisa... that would annoy the freaking HELL out of me too! I would opt for them to just back off for the first couple of years unless I asked. Hang in there hun! :bighug:

Lisa B said...

Hang in there Lisa - I remember getting Matt's ISP thing and thinking the categories didn't really fit and/or the way they answered them didn't really fit Matty either - but just remember they have standardized forms to fill in and they "make it fit" as best as they can - don't read too much into it - as Michael said, they are just establishing a baseline for Finn to get him into the system and when you actually start working with whomever, that is a whole different story - Matt's speech therapist was a wonderful woman who was really just brought to me through the county but she was her own person/professional and not a "county" worker - we had a great experience with her - so look at the Reg Center as the connector system and hopefully the individuals you get hooked up with will be lovely people to work with who enhance Finn's life and don't cramp your family's lifestyle! lisa B

rickismom said...

I suspect Mrs. Pallin's baby will be taken care of, in the meantime, by a nanny of some sort.....

I would highly recomed to you to download the following:

Click there one DS and print the files that show up. There are a lot of pages, but is really good stuff!

Jodi said...

I hate those standardized forms that force you to document things that shouldn't be so structured. We had to do "Desired Results" for the state department of ed. at a local preschool. Same thing - can a 5 year-old recite a poem? Maybe, but he'd rather be outside playing. Can the babies do x,y,or z? Maybe, but we'd rather be holding and interacting with them instead of filling out this stupid form. I would hate to have someone coming to my house and GRADING my children which is what it feels like.

Greg said...

Don't read too much into it. The person doing the evaluating spends very little time with them and has to make their assessments based on very short visits and for the most part, only the things that take place during those visits.

If your other kids are like mine, each one of them progressed and developed differently and on their own schedules.

So it's no surprise that our kids with DS may deviate from these standard schedules. Right?!

And our daughter Megan started rolling over early lie Finnian (at two months). My other kids didn't start rolling over that early. In fact she does several things that my other kids didn't start doing until they were older.

So I just take the assessment results with a grain of salt, knowing that things can change in any direction at any time.