A researching fool

Around this time, Austin lost another SLP. It was interesting, she was the one who told me to put him in daycare, and she was quiting to spend more time with her kids.
Anyway, I liked her, I really did. She seemed to really want to help Austin, we just didn't really agree on how to do that. She was still much better than Ms. "mental" and I wasn't happy to see her go.

Austin got yet another SLP who seemed to not know quite what to do with him. She gave him choices of toys and then he'd play with one, she'd ask him to turn it off when he got bored of it, and then make another choice. She kept saying we'd try PECS, which I was all for, especially because he wouldn't sign. Yet, she never laminated the cards.

On my end, I kept thinking it had to get better than this. I was frustrated. I told new SLP "This isn't enough!" but I had no idea what was wrong or what she should be doing.

By this point though, I was losing faith that anyone could help Austin. And why?? I knew he was difficult, but he wasn't THAT strange.

Anything he DID learn, he learned at home with me.
At the beginning of Dec., a good friend of mine came by with crackers. She gave Austin one. We were talking and our kids were playing, she gave her daughter a cracker and then casually asked if Austin wanted another. She wasn't expecting him to respond with anything other than his usual point and grunt. I wasn't either. Austin, just as cool as a cucumber, with a tiny smile, made the sign for "more"

By the end of December, he had learned many colors, and if asked "what's red?" (or blue, or green, or yellow etc), he would find an object that was that color and point it out, anywhere we went. Maybe that wasn't so amazing, but to me it did at least point to the fact that he COULD learn. He also knew so many body parts at this time it was almost funny (sideburns, knuckles, moles, eyebrows, and many many more) He has a good memory when he's interested. Still, I was cautious to be too happy about any accomplishment, and I still am and I hate that in a lot of ways.

I started reading everything I could get my hands on. I researched late into the night, reading all I could, even going over technical studies, reading and re-reading to make sense of them. The problem was I wasn't sure I could be objective about my own child. I knew TOO much, if that makes any sense, and there were too many emotions involved.

I read "Late Talking Children" and didn't like the forward at all (the statistics are beyond depressing) I also didn't like that it was all about Apraxia, and yet the title didn't indicate this. I was really hoping for a book covering more cases of late talking that just one. Well, it made me pretty sure Austin didn't have Apraxia, but he was just a couple of months over 2, (about 4 months ago) and things were still pretty confusing.

I also read " The Einstein Syndrome: Bright Children who talk Late" by Thomas Sowell. It was interesting. I wasn't sure if Austin was a Bright Child. He was (and is) very interested in how things work, he was easily unlocking both the small and the deadbolt locks on the front door at this time, and when we got a child-proof knob cover, it took him no time at all to defeat it. He had a good memory, but no interest in puzzles, and was actually pretty terrible at them (he's still not great, but at least I can get him to do them now...sometimes) He had a serious way of studying things, a serious expression that I recognized from pcitures of myself as a two-year old.

The thing I REALLY liked in the book was the advice that parents get someone who really knows what they're doing to evaluate and treat their child. As well meaning as the SLPs were, they didn't seem to know what to do for Austin, as nearly a year of therapy and no progress seemed to prove. In their defense, he switched so much and that could be part of the problem, but I was frustrated by their inability to get proper toys, to laminate PECS cards, to stay awake until 2am every night like I did, researching...okay I didn't really expect the last one, but I felt I cared SO much, and to them he was just a job. (with the except of sensory SLP, I think he really got to her, that's why I was sad when she left. I think she was the only one we've had so far that was motivated by him)

Anyway, in the book it mentions a Dr. Stephen Camarata, who has worked with children with various language and speech problems and who diagnoses carefully.

I didn't know what to call Austin's problem, and even more heartbreaking to me, I didn't know how to help him.

I wanted more info on Dr. Camarata, and went web surfing.

I found a yahoo group, and from this group, found out Dr. Camarata and Mary Camarata were still evaluating late-talking children.

I wasn't sure I belonged in the group. Their children didn't have autism and on some days I thought (and still do think) Austin might. Still, they were very friendly, helpful and thoughtful, and obviously really passionate about helping their children. Many of them shared in my frustration about therapies that seemed to do nothing but waste time, about people who said things about their children than made no sense to them (like the vestibular problems and not having the mental capacity for speech)

I knew of no one in the area who had as much experience or expertise, and I desperately wanted someone who had done tons of research, studies, and therapy with all kinds of late talking children to tell me what I needed to do to help Austin.

In January, I canceled speech therapy. Our insurance company made it easy for me, because they stopped paying for therapy. If it had been GREAT therapy, we would have found a way to keep it, but I was pretty convinced it wasn't doing him any good.

I called Mary Camarata, and she called back, and talked to me for nearly half an hour.

I explained the whole story, as quickly as I could (MUCH quicker than I'm telling it now, but I'm still never brief enough)

She was kind, and I explained I really needed to know what was going on and how to help. She suggested the university here (the university clinic here is full, and there's no one there with near the credentials. It's not exactly renowned for its SLP program and I think just about every SLP Austin had graduated from there. I was tired of SLPs telling me various stories, tired of no progress and needed some direction).

I decided we really needed to go to Nashville and see what they had to say. At least there I was confident Austin would have a good chance of getting a competent evaluation by people who had seen thousands of kids with various issues over 25 years.

We set an appointment for the end of March, which got rescheduled for the beginning of April. It was earlier than I thought we'd get in, because they were coming in on a Saturday for us. I felt better than I had in months, just at the hope of getting help.