Proactive parenting

The first book I read about autism had a section devoted to parents being advocates for their children. I read it but didn't realize how much it would apply to me, even here in affluent Orange County. I'm finding I have to be extremely proactive in making calls and following up to make sure things get done for Nate. Basically, no one else loves my son like I love him.

It was three months after Nate's initial evaluation through the state before he ever started therapy. Now at his therapy, which I am happy with overall, PECS (the picture system I wrote about over two months ago) still hasn't been implemented (should be this month).

Interestingly, a two-part article came out in the Orange County Register last week about how Orange County's regional center has "the worst complaint record with regards to services provided" in the entire state. Two days after the first installment came out, I received a call from Nate's RCOC caseworker--the first call in six months. (We are having a new IFSP meeting. IFSP stands for Individualized Family Service Plan; these change to IEPs--Individualized Education Plans--when Nate turns three.)

The "private sector" hasn't been any better. The neurologist, who is part of an organization dedicated to helping children with autism in Orange County, diagnosed Nate back in March. At the evaluation, she/the organization recommended Nate get a new speech evaluation (for therapy through our insurance in addition to what he's getting through the state) and get some bloodwork done; they would be taking care of getting the referrals and getting all the information together. Once the end of April rolled around and I still hadn't heard anything, I started making calls. We finally got a speech evaluation scheduled (it happened today after two reschedulings), but, five calls later, I still haven't received the information for getting the lab work. There's more annoyingness and calls and dropped balls, but I won't bore you. :)

Speaking of that speech evaluation, we went this morning to Speech Pathology Associates, which is here in Irvine (which I'm very excited about), and we spent a little over an hour with the head speech pathologist for her to evaluate Nate. It was the same woman who sat in on his neurology appointment in March, and I like her a lot. It is obvious she loves children and enjoyed Nate. She listened to me as if I knew what I was talking about and my knowledge mattered (which, of course, it does, but not all doctors operate that way). She agreed with me that Nate has good receptive language; he identified most of the objects she asked him to point out (but he didn't understand categorizing: when she put a little bed in front of him in addition to a few other objects and asked where we sleep, he didn't know). Nate behaved well and in general is doing so much better with eye contact, referencing (looking up during play), etc. He showed off by expertly completing a puzzle she brought out for him. At the end, the doctor said she'd like to have Nate come in twice a week (I'm not sure if that's two hours or two half hours--probably two hours). She has to complete her report and submit it to our insurance for approval, and then Nate should start his therapy there in two or three weeks. :)