I call it "#1" because it's definitely not the "first" assessment. But according to this round of doctors, it is. This is the first "official" round of testing, though, with an actual team of doctors working towards a diagnosis and therapy planning, so this is "#1." But before I get into that, I want to discuss how we got to "#1" in the first place.
Aside from day 1 at home from the hospital, when hubby was out stocking up on formula and diapers and I was actually left alone as a "new mom," I've never been one to overly freak out about all the can do's and can't do's. If it worked out, I did it. We had some issues with digesting milk and soy-based formulas, some sleep issues, and a rough, although brief, transition to milk, but no developmental issues. Princess reached all of her milestones on time, and in some cases, early.
At her three year check up, though, I was discussing with the doctor some abnormal things I was noticing: no attempt at the potty at all; no conversations initiated by her and most conversations seemed to be "scripted;" small fears of other children and some adults. He suggested we run a screen for Autism, at which point I agreed but shared my feelings on the subject. For the most part, he agreed with every concern I had but since we both agreed something was a little off, we screened her.
It came back that she was "normal" except for some social categories, and the doctor said he didn't see too much cause for concern, since Princess isn't around kids regularly. Still, I asked him to send in a referral to a developmental pediatrician anyways, better to know for sure. So he sent the referral and we heard from Children's Hospital. They sent us a mountain of paperwork to complete and send back, only they sent no address to send it back to. And even after leaving countless voice mails and sending emails, we never heard back from them. At the same time, though, Princess was making great strides and progressing so we figured she was just a little bit quirky and she just does things on her time. So we went on with our lives.
Around January, though, things turned around yet again. Fear was beginning to take over in all public scenarios, even some occassions where she knew the people around her very well. Her communication was virtually non-existant, though she spoke very well. She just wasn't speaking in ways that "made sense," never questioning "what's that? why?" etc. And while we had been 100% toilet trained by Christmas (thanks to a good friend's suggestion to tell her Santa wouldn't come if she didn't use the potty), she was regressing a bit there, too. I had put off the 4 year well-baby checkup as long as I possibly could (almost 2 months). I knew she would be screaming and it's just embarrassing. I shouldn't say that, but it is. People see children having tantrums or getting upset and they immediately judge "bad parent," not "wow that kid must be special needs." I do it, too, especially working in retail. So yes, it's embarrassing. But I finally made the appointment, for April 1 (the irony of this is not lost on me). That morning, as soon as I told her we were going to the doctor, she started screaming. The entire visit was an absolute nightmare, culminating in the doctor, yes the exact same doctor from 1 year before, saying, and without hesitation, "I think it's time she see someone, we'll call today."
Within a week, we were contacted by Children's Hospital. Since it is so incredibly difficult to get an appointment with a developmental pediatrician, we were initially sent to see a Behavioral Psychologist to help with Princess's fear and anxiety issues. The only problem here, though, is that without an official diagnosis, and since our psychologist isn't an Autism specialist, it's difficult to figure out an actual course of action. Still, we went, with the smallest glimmers of hope that SOMETHING would click. Many of her suggestions, for everything but the toilet training, were helpful. And it was, after all, her calling that did finally FINALLY get us an appointment with the developmental pediatrician.
So Princess and I go to THAT appointment, at yet another office. This is the appointment we've been waiting a year and a half to get in to, so of course the day before, Princess has a fever and both ends going. There was NO WAY I was canceling, so I stuck my little trooper in the car and off we went. I thought this was the appointment where we would get some therapy suggestions and start to get sent on the right path...
Turns out this "assessment" (if you're keeping track at home, this is now the 3rd doctor to evaluate her) was just to see if she needs further assessments. Which, surprise to no one, least of all me, she does. So now, we need to schedule THESE sessions. It is 2 3-4 hour sessions over 2 separate days, running a gamut of tests and analyses to come up with where "on the spectrum" the child is and how best to proceed. Our team would consist of a neurologist, developmental pediatrician, speech therapist, occupational therapist...
Which now, FINALLY, brings us to "#1." Not being one to be late, we arrived about 15 minutes early...not really a good thing for an Autistic child with a tiny waiting room full of other Autistic children, but need to learn how to be a member of society, right? Anyway...so the developmental pediatrician who heads "our team" comes out to greet us and take us back to our room. Once there, Princess is given the chance to "play." Let me just say, I feel kind of dirty using "play" as a judgement on how "normal" my kid is. Shortly after we went back to the room, the occupational and speech therapists came to get Princess to take her for individual testing, while I got to stay back and endure the Spanish Inquisition (ok, so she's Indian) on where it was that I messed up (I kid, I kid...though that truly is what it feels like, especially when you don't have every minute detail written down). At the end, we all came together to discuss what "they discovered," which, as it turns out, is exactly the same as all the other doctors we've paid alot of money to already...she's "on the spectrum." Though this group did add "but she's got some really awesome qualities" to their diagnosis. (Btw, this is now the 4th doctor that has given this diagnosis.)
So what now? Well, session "#1" was last Wednesday. They gave me a 3" "Autism Manual" to read before session "#2," which is this Friday...not even a half inch into the reading. This session is supposed to be Princess going through even more, intensive, individual testing. Hopefully after Friday, "testing" will be done (this, of course, does not include the testing the school system has to do to determine if she's "autistic enough" to warrant state-funded educational programs) and we can move forward with therapy.
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