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.

A Quick Update

So we interviewed a ton of nannies. Good nannies, not-so-great nannies, and one nanny who didn't even show up for her interview. We ended up hiring her -- I like an air of mystery about my support staff. Just kidding! What I really meant to say is that we found a really nice woman named Selena who now comes in the mornings to take care of Sadie while I hide out at a coffeeshop and attempt to return to some semblance of a normal work schedule.

Sadie has been progressing in leaps and bounds, which I attribute partly to her not being in day care anymore, partly to twice-weekly physical therapy, and partly to my working with her a LOT. Scott gets partial credit, too, but he's been out of town a lot so by default, I get to claim most of the credit for all of the cool things she's finally started doing.

It's so great to watch her learn -- she's quite literally packing months' worth of learning into a few short weeks. Just in the last week she's doubled her crawling speed, almost figured out how to pull up on furniture, started to take the first tentative steps towards cruising (walking along on furniture), and in general become fearless around the house.

Outside is a different matter; she still sobs her way through PT and is very shy and prone to bursting into tears when in an unfamiliar environment. Joy, the therapist, refers to her dryly as being on a "constant emotional rollercoaster," which is a nice way to saying that she's kind of a shit head.

This morning Joy told me something great, which is that in her estimation, there's nothing about Sadie's physical makeup that is keeping her from learning typical skills. Despite being long and skinny, she's strong enough to move around as well as any other kid -- and she proved that by learning how to crawl in the span of about five days, something that kids with hypotonia "just don't do," in Joy's words.

What really holds Sadie back, in Joy's opinion, is her natural tendency towards cautiousness that manifests as wussy-ness. Rather than wanting something and impulsively throwing herself towards it, as a typical baby might do, Sadie stops, considers, and weighs risk versus benefit. If the motion requires too much effort, or is unfamiliar and potentially scary, she doesn't want to do it. Hence she can stand while balancing against a chair until the cows come home, but the thought of sitting down by herself makes her shriek in terror.

The way to combat this is to help her through the motions, over and over again, until they become rote instead of something she needs to think about. Stand up, sit down, pull up, walk over, sit down again. Eventually she'll have the confidence to do it every day.

Although I don't think that a career as a bullfighter is in the cards for her.

A Little Muscle

Do you ever feel sorry for yourself, and then get annoyed at yourself for feeling sorry for yourself, and then pity yourself because now someone's annoyed at you?

Or is that just me?

It's been a long week, with Scott in Anchorage for work and Sadie starting a new day care, only to discover that she is in no shape right now to move to a new place with new people.

I wrote a really long, bitter blog post a couple of days ago which, when I reread it the next morning, horrified me. I sounded so bitter and annoyed about everything that's going on, and it just read like ME ME ME WAAAAHHH MY LIFE.

I deleted it and decided to start over, but the last three days have been so hectic that I never got the chance. I don't have it in me to start over from the beginning, but the short version goes like this:

Sadie started at her new day care on Wednesday, for a half day. Three hours in, I got a call from Rose that Sadie hadn't stopped screaming ever since she put her down on the floor. She would only stop crying if Rose held her -- but she'd taken her nap and eaten lunch beautifully. It was only play time that she wouldn't tolerate. Rose didn't know what was wrong, but she did tell me she thought Sadie's behavior wasn't normal, and advised me to take her to the doctor.

Once we got home and I spent Wednesday afternoon and Thursday morning with her, I couldn't help but notice that Sadie's behavior really has grown extreme. She wouldn't let me walk more than two feet away from her without bursting into hysterical tears. She wanted to be with me at all times.

The doctor examined her, put her on the table and urged her to go after a toy -- Sadie wouldn't, couldn't, and started to cry. I explained it to her: this is what happens. She has no mobility at all, really -- even the crawling backwards has stopped, because it frustrates her not to be able to move in the direction she wants to go.

The doctor diagnosed her with mild hypotonia, which is something you should never, ever Google if you think your kid has it, because you will give yourself a heart attack and call your spouse in utter panic, as Scott did, saying, "She'll never catch up to the other kids! I think she has an overactive thyroid! Have you noticed a slack jaw and copious drooling?"

What it is, essentially, is low muscle tone, and it means Sadie could benefit greatly from physical therapy. It's a problem that could or could not be grown out of on its own, but if she doesn't grow out of it then it could easily grow worse, as she gives up and stops trying out of frustration.

Speaking of the frustration, the doctor explained that what's likely happening to Sadie attitude-wise is the same thing that happens to toddlers who are slow to master speech. They desperately WANT to talk, they know what they want to say -- they just aren't able to tell you. All that frustration manifests itself as tears, anger, tantrums.

Sadie's like that, except her problem is that she can't crawl after a ball that has rolled away, can't follow me when I walk across the room, can't explore a new toy that has caught her eye but is just out of reach. I try to imagine living like that, like a person who uses a wheelchair but has been told that they can't use it and must just sit in the center of the room all day, and I can't imagine the frustration she must feel. She wants to explore her world and can't do it.

I'm really looking forward to the physical therapy evaluation Monday morning, and learning how to help her strengthen her muscles. I'm also trying to swallow worry over what the next few weeks will bring, as far as who will take care of her while I'm working, how much time each day will need to be devoted to strength exercises, how long it will take to see improvement, and how to explain to her other caregivers what she needs. I hope, more than anything, that increased mobility will make her happier and more content than she currently is.

I'm tired, but relieved to have a diagnosis and confident that now things can get better.