Regional Center

So, yay! We finally got contacted by the North Valley Regional Center for a developmental assessment.

The Regional Center is a fantastic thing -- it's a not-for-profit business that provides free help for children with developmental delays. Many of the children they work with are far worse off than Sadie -- kids with autism, retardation or neurological problems. For these kids, the Regional Center is a lifeline: they refer parents to in-home physical therapy teams, behaviorists, even childcare, all for free or the cost of an insurance deductible.

Everyone from our pediatrician to our nanny has recommended the Regional Center, with the caveat that they don't approve all applicants, and are often very backed up so it can take weeks or even months to be evaluated and approved for help. With that in mind, we sent in an application about a month ago, but went ahead and found Joy on our own without waiting for approval that we might never get.

Nevertheless, when they assigned a case worker to Sadie two weeks later, it was positive news. And last night I got a call from an assessor, asking if she could come by today and evaluate Sadie.

What we learned was really interesting. It was great, for one thing, to see Sadie finally be evaluated by someone who has familiarity with low muscle tone babies, and to see her put through a series of tests to get a solid idea of just how behind she is. The format they use is called the Gazelle test, and it divides skills by month as a way for the assessor to determine where a baby is compared with other children of the same age.

The assessor, a very sweet woman named Rita, tested Sadie's fine motor skills as part of the full work-up. All of those tests she passed with flying colors. She can bang blocks together, fit a peg into a hole, pull on a string to pull a toy towards her, and find a block hiding under a plastic cup. She even did some things that surprised me, like stacking one block on top of another without prompting. In nearly all of her fine motor skills she's on par with 12 and 13 month-olds.

The telling part came when we moved on to gross motor skills. I showed Rita the range of Sadie's abilities, which extend to crawling, pulling up on me, taking a few tentative steps while hanging on to furniture. Rita observed that in this area Sadie's on par with 8 and 9 month old babies.

Rita then surprised me by saying that in her estimation Sadie's hypotonia is quite moderate, not mild as we thought at first. She points out how Sadie sits: with her legs and butt making a "W" shape for maximum stability. She pointed out how her hips wobble back and forth when she stands, and how she tends to lean forward over her ankles instead of standing straight. This occurs because of the looseness in her joints, giving her an above-average range of flexibility and making her, in Rita's words, "loosey-goosey."

To demonstrate this, Rita basically sat Sadie down on her lap, grabbed her legs, and waved them around in a giant circle, shoving them into her mouth and pointing them in wild directions. Dude. Kid is CRAZY flexible. She may never be a bullfighter, but she might just become the world's tallest gymnast.

Kids like Sadie generally reach their first milestones later than other kids do -- she probably won't walk for another couple of months, and she'll most likely be late to run, climb or jump (not a surprise considering how risk-averse she is). Eventually she'll catch up and the delays will become more subtle and less immediately noticeable -- for example, Rita noted that kids like her are often late to learn how to ride a bike. As we've been told before, getting her into sports and helping to strengthen her muscles through exercise will help minimize this gap.

I explained the issues we've been having with her tantrums -- how she now refuses to cooperate during PT and is prone to throwing massive hissyfits at the drop of a hat, at which point she'll throw herself dramatically onto the floor, lie there and wail until the session is over. Rita stressed that for kids like her, in-home PT tends to be much, much more successful than off-site. Kids are familiar and relaxed in their own surroundings, willing to try new things and to cope with frustration. (And sure enough, she was an angel through the entire eval, which took place on our living room floor.)

She also scoffed at the idea of taking Sadie to see a developmental pediatrician or a child psychiatrist, saying, "I REALLY am not getting that she needs that." Bless her heart.

All in all, she's going to take her findings back to the case worker and recommend that Sadie be approved for a series of in-home therapy sessions. Whether or not they'll accept her is borderline. Typically to be approved a child must exhibit a developmental delay at 50% or less of their expected capability -- that is to say, in order for a one year old to qualify, they should be evaluated as having the capabilities of a 6 month old. Sadie, as I said, is at 8-9 months.

Even if she doesn't get approved, though, I think we'll still consider switching to in-home therapy. As nice and as patient as Joy is, it's a waste of her time and of ours to bring Sadie in and see her fuss and scream for an hour every week. She isn't learning any new skills because she's so bound and determined not to cooperate.

And we must keep baby happy.