Okay, not really. It was actually a little Kia we rented from enterprise.
I really hate evaluations. In the evaluations Austin had in the past, he was at his worst, wouldn't look, wouldn't point, and then there was always the fun of hearing about all the things he CAN'T do that every other kid his age can.
I knew the people we were going to see were very good at doing evaluations, and I wanted to know how we could help Austin, but I wasn't looking forward to the part where he didn't do what he was supposed to.
He didn't, of course, cooperate for the IQ test, at all. Just wouldn't do it. He's like that with so many things. He doesn't like to do puzzles with me, he doesn't like to match, with the things he DOES do, it's hard for me to think he's cognitively impaired, but sometimes it's so hard to teach him things. Not because he couldn't do it, but because he's not interested. When he IS interested in something, he picks it up quickly and remembers it well.
It's interesting seeing my friend's daughter. She is very social. She likes people she knows and is interested in whatever they're doing just because they're doing it. It's very easy to teach her new things because of this, and I really enjoy it. I enjoy Austin too, of course, but with him it's much different. Austin likes us, but is only interested in what we're doing if it's something HE likes. For my friend's daughter, it's the people that make something interesting. For Austin, it's the thing that makes the person interesting.
Anyway, Mary Camarata didn't make him do a thing, and therefore, he liked her quite a bit :) Not enough to do the IQ test, but quite a bit.
He did a few puzzles and other things, and I finally found out why when doing a new puzzle, he'll try to put the second piece on top of the first piece (he goes to where he was successful before)
The Camaratas then showed me how to do therapy with Austin, and it was a total 180 from his previous therapist. Mary Camarata had him saying "up" within a minute, seriously. I couldn't believe it. I've been saying "up" to him for months, every time we go up the stairs at home, every time he goes up the stairs for the slide, but he never tried to say it back. They didn't make him play with only one thing, they let him go back and forth and he was looking at them,touching them, and making quite a bit of verbal attempts.
I can't say how nice that was to see. I really wanted to cry.
After the session, we sat down to talk about Austin's diagnosis, and what we should do. We know for sure he has a phonological disorder, which means he doesn't understand how the system of sounds makes words. He uses very few consonants, mostly vowels. I think there's a receptive issue as well, he doesn't understand language as well as he should. He definitely has some understanding, but not as much as he should for his age. I know for sure the only "diagnostic" type word I heard is phonological disorder, but I think they also think there could be some other going on, but either they didn't want to say for sure without the IQ test or they didn't want to overwhelm us. I know they're straight shooters, so I don't think they'd deliberately hold back, but if they also felt they didn't have significant evidence to diagnose something, they wouldn't diagnose based on pure speculation.
The funny thing was: we were trying to talk about all this, and Austin kept taking Dr. Camarata's hand and leading him back to the toys to play. He'd never done that to anyone before. I think that amazed me so much that it was hard to concentrate on the conversation.
What I did get for sure was that this isn't a delay, it's a disorder that he won't outgrow. I remember Dr. Camarata saying he wouldn't outgrow this, not that he wouldn't mature but that he wouldn't outgrow this.
What I wish I asked now was whether he was just telling us that this was definitely a disorder and not a delay, and it will be a long road with lots of therapy, or whether he was saying Austin's language will never "normalize" I'm not sure which he meant, and it's more than a little disconcerting.
We'll hopefully get the written report in not too long, and if that doesn't answer all my questions, I'll email.
The Camaratas agreed with me that preschool wouldn't be the best place for Austin right now, and he should stay home for at least another year. I'm doing my best to do therapy the way they showed me twice a day for 20 minutes (and trying to model language all day long) We're also trying to find a speech therapist who will work with Austin just like the Camaratas did and like I'm trying to do.
At the end of the appointment, Austin actually gave Mary Camarata a hug, like ran into her arms, another thing I was amazed about because Austin does that to my husband and I, but not to other people.
We're
All in all, it was great. We had a direction and knew what would help, and why what the SLPs had tried so far hadn't worked. He doesn't like people dictating what he can and can't play with, and he doesn't like people taking away his toys. he'll refuse to cooperate when that happens. We have to get creative and find ways to enter into his play without withholding or dictating what he plays with. Some SLPs we had were close to this, but insisted he only have one toy out at a time. That made Austin not cooperative, but as I saw with the C's, if Austin could freely move between 2 or 3 toys, he stayed with one toy longer. Also, it was no big deal to move between 2 or 3, I just would move with him. It's so funny, but if Austin KNOWS he doesn't HAVE to play with just one toy, he'll stay with a toy for a long time.
The C's also confirmed what I already knew: no ADD, no sensory issues. He's not at all hyper, and definitely can stay with one task when he wants to stay with it.
Honestly, I wouldn't be that surprised if Austin did end up with a PDD disorder diagnosis at some point, just because he isn't as socially motivated as a lot of kids BUT for now, I don't think we really need it. He doesn't have major behavior problems...well other than ignoring people. That one's pretty major, but for now, I'm working on the speech thing and hoping that might help the people thing. I think part of his ignoring people is that he doesn't understand what they're saying half of the time, and he honestly is shy and a little wary of people. If this doesn't improve, we'll try working on it when he's older. He's also trying to get a little picky in eating but nothing major) I'm hoping my working with him at home (and the SLP when we find him or her) will help him. I know preschool wouldn't help him for now, because he wouldn't be motivated for the teacher (unless she or he just happened to know exactly how to work with a child like Austin, and that seems unlikely. Forget about the social aspect of preschool helping Austin either, he needs one on one, and he would just do his own thing and ignore the other kids.) We'll cross that PDD disorder diagnosis bridge if and when we need to.
In fact, we're going back to Nashville next year for a follow-up. We'll see what things look like then, and we'll get new advice about what else we need to be doing at that time.
I was soo happy to find the Camaratas. They were the first and only professionals I've found who gave me hope that other people actually understand Austin and know how to help him. Now, I just hope I can find an SLP here who knows how to help him. I'm doing therapy for now, but it's hard not to have an actual professional guiding us and working with him as well. If we can't find one, we might have to move to Nashville. That wouldn't be bad, it's a nice city. Haha, hubby wouldn't go for it though, he was complaining the whole time that he was the only brown guy there.
I have to confess, I still cried that night in the hotel room after the guys were asleep. We had direction now, but it's still hard not to feel sad sometimes for Austin, not to wonder what this all means, why it happened, wish I could just transfer my ability to communicate to him. He's not sad right now, but when I think about how it will be when he gets older, it's scary. I have to remind myself to just take a day at time and do all that we can to help.
Thursday, April 23, 2009
Thursday, April 16, 2009
The night before
We're in the hotel room in Nashville. It's 8:30 on a Friday night, and we're all tucked in bed, Austin in the middle of my husband and I. The lights are out, but we're all awake. My husband isn't too thrilled but I'm insistant on the lights out, TV off thing. Austin needs rest.
Austin, unlike hubby, IS thrilled. He's thrilled to be in a hotel and thrilled to be in bed with us. He's slept in his crib since the day we brought him home from the hospital, poor baby! The only time he sleeps with us is if he's sick. This isn't for philosophical reasons so much. It's because when he was a tiny baby, I was terrified one of us would squish him, then when he got older, he was a kicker. Before anyone reading this tries to tell me not sleeping with him caused his issues, I never let him cry it out, held him all day long long, and then rocked him until he fell asleep at night- now someone else will probably tell me THAT caused his issues -- Bring It. (Ha see, I still have some defensive issues to work through, even though I like to ACT all cool like the jerks of the world can't bother me) Anyway, Austin had a great day exploring Nashville, and is just too excited to settle.
For a while, we play, I tickle him, we play "this little piggy" with daddy, then he "names" the parts of my face "geegoo" he says, pointing to my forehead, "gee" is my cheek, and also my nose, then he points to my eye and says "eye!" That makes my night. It's the first time he's ever labeled anything that clearly. It calls for celebration.
Finally though, I know I have to get tough about settling him down. The appointment is in the morning, and the last thing I need is him tired and cranky.
"Austin, lay down" He complies, giggling like crazy. "No more" I say in my best firm voice. "time for sleep, close your eyes" I turn and face away from him to drive the point home. He pops up. I sigh. It's now 9:00 "AUSTIN LAY DOWN" I don't yell it, but now it's in my sternest mommy tone. He leans over, kisses the back of my head, and then lays down. He curls up close to me, puts his little hand on my shoulder, and pats gently.
30 seconds later, he's totally out.
I stare out into the darkness. My husband and I talk a little. He's trying to distract me from tomorrow with small talk, it's not working. I love him so much, but I'm so wrapped up in all this that I'm not always good at showing him. I don't know how he's handled being with me over this past year, and sometimes I worry that he won't be able to keep handling it. I tell him this, he tells me he loves me even though I'm beyond over dramatic.
Soon, my husband is snoring, and I stare some more. In fact, I stare at the ceiling until the alarm clock goes off at 7:30am.
Austin, unlike hubby, IS thrilled. He's thrilled to be in a hotel and thrilled to be in bed with us. He's slept in his crib since the day we brought him home from the hospital, poor baby! The only time he sleeps with us is if he's sick. This isn't for philosophical reasons so much. It's because when he was a tiny baby, I was terrified one of us would squish him, then when he got older, he was a kicker. Before anyone reading this tries to tell me not sleeping with him caused his issues, I never let him cry it out, held him all day long long, and then rocked him until he fell asleep at night- now someone else will probably tell me THAT caused his issues -- Bring It. (Ha see, I still have some defensive issues to work through, even though I like to ACT all cool like the jerks of the world can't bother me) Anyway, Austin had a great day exploring Nashville, and is just too excited to settle.
For a while, we play, I tickle him, we play "this little piggy" with daddy, then he "names" the parts of my face "geegoo" he says, pointing to my forehead, "gee" is my cheek, and also my nose, then he points to my eye and says "eye!" That makes my night. It's the first time he's ever labeled anything that clearly. It calls for celebration.
Finally though, I know I have to get tough about settling him down. The appointment is in the morning, and the last thing I need is him tired and cranky.
"Austin, lay down" He complies, giggling like crazy. "No more" I say in my best firm voice. "time for sleep, close your eyes" I turn and face away from him to drive the point home. He pops up. I sigh. It's now 9:00 "AUSTIN LAY DOWN" I don't yell it, but now it's in my sternest mommy tone. He leans over, kisses the back of my head, and then lays down. He curls up close to me, puts his little hand on my shoulder, and pats gently.
30 seconds later, he's totally out.
I stare out into the darkness. My husband and I talk a little. He's trying to distract me from tomorrow with small talk, it's not working. I love him so much, but I'm so wrapped up in all this that I'm not always good at showing him. I don't know how he's handled being with me over this past year, and sometimes I worry that he won't be able to keep handling it. I tell him this, he tells me he loves me even though I'm beyond over dramatic.
Soon, my husband is snoring, and I stare some more. In fact, I stare at the ceiling until the alarm clock goes off at 7:30am.
Killing Time
Between January and April of this year, I must have second-guessed myself a million times. I went from being sure it wasn't autism to sure it was and back again all in the same day, even in the same hour.
One day it would seem he was making progress, I felt we were really turning a corner. The next day, it felt hopeless.
I wasn't sleeping, and I also wasn't wanting to start the day. I wasn't eating anything healthy, but I'd often find myself cramming my face with junk I couldn't believe I bought and couldn't even taste much less enjoy. The good thing about having someone who depends on you soo much is that you're not allowed to wallow in a depression. You HAVE to move your ass and get your child breakfast and play with him and talk, talk, talk and go places and clean the house and bath him, OH and I'm an online math tutor, so when Daddy came home to take over, I got on the computer and worked (not a lot, but enough to keep me busy) Thank God for responsibilites!
It had been over a year since I first became worried, and it was really sinking in that this wasn't going to be something that I would one day laugh about. Not really so much with me, but with lots of very well meaning people who used to tell me that. It feed me hope, and still, there's always hope but everyone was kind of getting the picture that this was BIG, and serious and I knew no matter what it was, mama wasn't crazy to have been moved to tears with worry over her 13 month old boy. People stopped saying "oh don't worry, I bet he'll be talking in no time"
Moms know what's up, even new moms. Even when they don't know exactly what's wrong, they usually can tell when something isn't quite right.
I seriously decided to keep myself as busy as possible between January and the begining of April to keep myself sane.
We have a couple of very good friends here, who I meet up with once a week at least, it was easy for me to be around them. I can be totally honest with them, and their children are a year younger than Austin. Seriously, without them and my online support group, I think I would have lost it by now. Around this time, my friends' kids were beginning to REALLY talk, which was hard, and yet not, since I love their kids and delight in seeing them accomplish new things ALMOST as much as I do my own.
We also joined a playgroup. I think it was actually more for me than for Austin. I had to be around other people to keep from going completely off the deep end, even though it was hard to be around other people. Austin didn't mind people, he didn't freak out about being with a lot of people, but didn't reach out to them either.
It was hard to go out with all those other moms and 2 year olds and see how Austin was soo close to being the same, yet sooo different. On the playground, he looked the same. It was hardest when we did any activity. The other moms had no trouble getting their little ones interested in whatever it was, Austin usually could care less. I thought to myself "at least he doesn't flip out, he goes his own way, but he doesn't get scared or totally lose it" I didn't know though, whether to explain or not to explain our situation to these new people. I didn't even know how to explain it, or what "it" was. They were (and are, we're still in the playgroup) kind and supportive, and said "let us know if there's anything we can do to help him" which is so much better than the kind of people who say "let me tell you what you need to do to help him".
When I actually let myself trust people, it's refreshing to see that most people aren't jerks. They really aren't. Sure, there are some, but I believe half of them just don't know any better. They're not intentionally jerks, and I can't be mad at them because I've been there just out of ignorance and saying the absolute wrong thing, not to hurt anyone but just because I don't know how to put my foot in my mouth sometimes, and other times I'm a jerk because I'm so absorbed in myself and my problems, I don't pay attention as much as I should to people and things I should pay attention to. I'm a jerk SOMETIMES but I try not to be. (Oh! and the other half of people who are jerks are TRY to be, and they're just mean or bitter or have more issues than me or Austin ever will and it does no good to get all bent out of shape about them. They're the kind of people who can't ever mind their own business, but personally I have more than enough business of my own to pay any attention to them)
This was pretty much our life from Jan to April, with me still functioning, but in a go through the motions kind of way. Austin was Austin, being with other kids 3 times a week did nothing to help his language, and I knew it wouldn't, but it was still good to get out, to do fun things.
At home, I tried to do something called modeling and recasting. It's simple, actually. The modeling part is just naming whatever it is that Austin is doing or looking at, but just with one word. A lot of times when I did this, Austin seemed to not being paying the least bit attention to me, BUT later I would find he did indeed know the word, and that was something else that confused me about him. Why did he recognize so many words and attempt to say so few? Anyway, the recasting part is when Austin would make some sound, I would try to figure out what it was he was "talking" about, and say the word. (ie Austin points to the cat and says "a", I say "cat!" )
I do this so much, sometimes I think I'm going to totally lose my ability to speak a phrase longer than 1 or 2 words.
I can't describe how relieved I was when it was finally April. Not because I thought going to Nashville was going to make everything all better, but I hoped it would at least give us a direction. The worst part about this whole last year was not knowing what to do to really help Austin, especially when the people that I thought would help him certainly didn't seem to do much good (eeeh, see, that's what I mean about sounding like a jerk! I hate that it sounds like I'm totally trashing the SLPs all the time. I'm not trying to! I don't hate them!)
One day it would seem he was making progress, I felt we were really turning a corner. The next day, it felt hopeless.
I wasn't sleeping, and I also wasn't wanting to start the day. I wasn't eating anything healthy, but I'd often find myself cramming my face with junk I couldn't believe I bought and couldn't even taste much less enjoy. The good thing about having someone who depends on you soo much is that you're not allowed to wallow in a depression. You HAVE to move your ass and get your child breakfast and play with him and talk, talk, talk and go places and clean the house and bath him, OH and I'm an online math tutor, so when Daddy came home to take over, I got on the computer and worked (not a lot, but enough to keep me busy) Thank God for responsibilites!
It had been over a year since I first became worried, and it was really sinking in that this wasn't going to be something that I would one day laugh about. Not really so much with me, but with lots of very well meaning people who used to tell me that. It feed me hope, and still, there's always hope but everyone was kind of getting the picture that this was BIG, and serious and I knew no matter what it was, mama wasn't crazy to have been moved to tears with worry over her 13 month old boy. People stopped saying "oh don't worry, I bet he'll be talking in no time"
Moms know what's up, even new moms. Even when they don't know exactly what's wrong, they usually can tell when something isn't quite right.
I seriously decided to keep myself as busy as possible between January and the begining of April to keep myself sane.
We have a couple of very good friends here, who I meet up with once a week at least, it was easy for me to be around them. I can be totally honest with them, and their children are a year younger than Austin. Seriously, without them and my online support group, I think I would have lost it by now. Around this time, my friends' kids were beginning to REALLY talk, which was hard, and yet not, since I love their kids and delight in seeing them accomplish new things ALMOST as much as I do my own.
We also joined a playgroup. I think it was actually more for me than for Austin. I had to be around other people to keep from going completely off the deep end, even though it was hard to be around other people. Austin didn't mind people, he didn't freak out about being with a lot of people, but didn't reach out to them either.
It was hard to go out with all those other moms and 2 year olds and see how Austin was soo close to being the same, yet sooo different. On the playground, he looked the same. It was hardest when we did any activity. The other moms had no trouble getting their little ones interested in whatever it was, Austin usually could care less. I thought to myself "at least he doesn't flip out, he goes his own way, but he doesn't get scared or totally lose it" I didn't know though, whether to explain or not to explain our situation to these new people. I didn't even know how to explain it, or what "it" was. They were (and are, we're still in the playgroup) kind and supportive, and said "let us know if there's anything we can do to help him" which is so much better than the kind of people who say "let me tell you what you need to do to help him".
When I actually let myself trust people, it's refreshing to see that most people aren't jerks. They really aren't. Sure, there are some, but I believe half of them just don't know any better. They're not intentionally jerks, and I can't be mad at them because I've been there just out of ignorance and saying the absolute wrong thing, not to hurt anyone but just because I don't know how to put my foot in my mouth sometimes, and other times I'm a jerk because I'm so absorbed in myself and my problems, I don't pay attention as much as I should to people and things I should pay attention to. I'm a jerk SOMETIMES but I try not to be. (Oh! and the other half of people who are jerks are TRY to be, and they're just mean or bitter or have more issues than me or Austin ever will and it does no good to get all bent out of shape about them. They're the kind of people who can't ever mind their own business, but personally I have more than enough business of my own to pay any attention to them)
This was pretty much our life from Jan to April, with me still functioning, but in a go through the motions kind of way. Austin was Austin, being with other kids 3 times a week did nothing to help his language, and I knew it wouldn't, but it was still good to get out, to do fun things.
At home, I tried to do something called modeling and recasting. It's simple, actually. The modeling part is just naming whatever it is that Austin is doing or looking at, but just with one word. A lot of times when I did this, Austin seemed to not being paying the least bit attention to me, BUT later I would find he did indeed know the word, and that was something else that confused me about him. Why did he recognize so many words and attempt to say so few? Anyway, the recasting part is when Austin would make some sound, I would try to figure out what it was he was "talking" about, and say the word. (ie Austin points to the cat and says "a", I say "cat!" )
I do this so much, sometimes I think I'm going to totally lose my ability to speak a phrase longer than 1 or 2 words.
I can't describe how relieved I was when it was finally April. Not because I thought going to Nashville was going to make everything all better, but I hoped it would at least give us a direction. The worst part about this whole last year was not knowing what to do to really help Austin, especially when the people that I thought would help him certainly didn't seem to do much good (eeeh, see, that's what I mean about sounding like a jerk! I hate that it sounds like I'm totally trashing the SLPs all the time. I'm not trying to! I don't hate them!)
Tuesday, April 14, 2009
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.
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.
Monday, April 13, 2009
Still on the road to nowhere
We went to yet another therapy session with Ms. "he doesn't have the mental capacity" and I planned to basically fire her when she surprised me with "Next time is my last session, I'm leaving and the center will get someone else to take over Austin's therapy"
I could have jumped up and down! Maybe Austin would get someone useful!
We also headed over to the developmental pediatricians office to fill out the initial paperwork needed to schedule an appointment. I was a little hesitant. Two different parents had low opinions of this doctor and her staff, but I didn't know where else to go. I entered the office and could see immediately why the parents had complaints with the staff. The young man behind the front desk had his jeans down to his knees, with heavy gold chains around his neck and a t-shirt with Gothic lettering. I'm all for people wearing whatever they like on their off-hours, but I couldn't believe he was allowed to dress unprofessionally on the job. If he had been friendly and helpful, I might have been able to look past it, but guess what? Yeah, not so much.
The forms were all questions about ADD, and not much seemed to relate to Austin or to any 2-year-old child for that matter. Still, I did my best to fill them out and got an appointment for 2 weeks from the day.
As the appointment got closer, I had this feeling this appointment would be a waste of time at best. Two days before the appointment, I got a call from the office saying the appointment would be $300. Well, that pretty much settled it. I wasn't willing to pay that much for a doctor I had heard no good things about.
But where were we going to go now?
Meanwhile, Austin had started with a new therapist, who suggested he had sensory and attention issues and needed to bounce on a ball to be able to attend to the therapy session. I had no clue. It confused me because Austin sat perfectly well and still all during church, and during concerts, but I didn't really know anything about it, and was willing to try anything that might help and wouldn't hurt.
We balanced Austin on a ball while the SLP let him play for a minute with a fun toy. Then, she'd take the toy and ask him to sign "more". He would point and grunt for the toy, but refused to sign. It seemed impossible that he didn't understand what we wanted him to do, it was like he was digging his heels in and would rather not have the toy back than to have to sign "more". I'd move his little hands to sign "more" and then he'd get the toy back. Repeat this for a couple of months.
The SLP started really pushing to get an OT eval, saying he could have OT and speech at the same time and that would probably be the only way he would make progress.
I hesitated. It just didn't seem to fit to me. Austin seemed to react to things normally to me, at least as far as sensory issues were concerned. How did one prove sensory issues, and how would rolling around on a ball and being brushed and swung help him speak? I just couldn't wrap my mind around it. Maybe, if Austin had really seemed uncomfortable in his own skin, I would be more open to the idea. The thing was, he DID try to avoid the SLP, and I wasn't sure it it was an autism issue or the fact that she took things away and made him ask for them back that he wasn't comfortable with.
He was very affectionate with his father and me (and still is) He gave us kisses, patted our heads, was happy when we came back, cried when we left, smiled at us and looked at us often., with the SLPs, it was a totally different story and I couldn't figure out the reason.
I'm still not sure.
I could have jumped up and down! Maybe Austin would get someone useful!
We also headed over to the developmental pediatricians office to fill out the initial paperwork needed to schedule an appointment. I was a little hesitant. Two different parents had low opinions of this doctor and her staff, but I didn't know where else to go. I entered the office and could see immediately why the parents had complaints with the staff. The young man behind the front desk had his jeans down to his knees, with heavy gold chains around his neck and a t-shirt with Gothic lettering. I'm all for people wearing whatever they like on their off-hours, but I couldn't believe he was allowed to dress unprofessionally on the job. If he had been friendly and helpful, I might have been able to look past it, but guess what? Yeah, not so much.
The forms were all questions about ADD, and not much seemed to relate to Austin or to any 2-year-old child for that matter. Still, I did my best to fill them out and got an appointment for 2 weeks from the day.
As the appointment got closer, I had this feeling this appointment would be a waste of time at best. Two days before the appointment, I got a call from the office saying the appointment would be $300. Well, that pretty much settled it. I wasn't willing to pay that much for a doctor I had heard no good things about.
But where were we going to go now?
Meanwhile, Austin had started with a new therapist, who suggested he had sensory and attention issues and needed to bounce on a ball to be able to attend to the therapy session. I had no clue. It confused me because Austin sat perfectly well and still all during church, and during concerts, but I didn't really know anything about it, and was willing to try anything that might help and wouldn't hurt.
We balanced Austin on a ball while the SLP let him play for a minute with a fun toy. Then, she'd take the toy and ask him to sign "more". He would point and grunt for the toy, but refused to sign. It seemed impossible that he didn't understand what we wanted him to do, it was like he was digging his heels in and would rather not have the toy back than to have to sign "more". I'd move his little hands to sign "more" and then he'd get the toy back. Repeat this for a couple of months.
The SLP started really pushing to get an OT eval, saying he could have OT and speech at the same time and that would probably be the only way he would make progress.
I hesitated. It just didn't seem to fit to me. Austin seemed to react to things normally to me, at least as far as sensory issues were concerned. How did one prove sensory issues, and how would rolling around on a ball and being brushed and swung help him speak? I just couldn't wrap my mind around it. Maybe, if Austin had really seemed uncomfortable in his own skin, I would be more open to the idea. The thing was, he DID try to avoid the SLP, and I wasn't sure it it was an autism issue or the fact that she took things away and made him ask for them back that he wasn't comfortable with.
He was very affectionate with his father and me (and still is) He gave us kisses, patted our heads, was happy when we came back, cried when we left, smiled at us and looked at us often., with the SLPs, it was a totally different story and I couldn't figure out the reason.
I'm still not sure.
He doesn't have the mental capacity for speech
When we go for our actual speech therapy appointment, I was surprised. The same person who did the eval wasn't our therapist. Apparently she was booked so she gave us to someone else. At least that's what they told me when I asked at the front desk.
This SLP said she first wanted to just observe Austin. Austin was right around 2 at the time. He was trying to find and push his boundaries, just like any other kid his age.
He wandered around, looking for things to play with, he knocked over a little chair, the SLP put it back up and he knocked it down again. (I wasn't allowed to tell him no) He found a little ball with velcro on it. He touched it hesitantly, dropped it in surprise, and then picked it up again. He didn't cooperate with the SLP at all. He spun in a circle for a moment while we talked. She looked at him very concernedly.
Finally, she told me "he has a lot of stims, he doesn't seem to know a chair is for sitting, not knocking down and he has tactile defensiveness. Next time, I'd like you to wait in the waiting room and I'll try to get him to imitate sounds"
I was suddenly longing for my twice a month visits from ECI, but I was willing to give this therapist a chance. I thought we'd give him a month.
After a couple of weeks, she told me we should stop trying to get him to imitate sounds and just try to get him to the point where he would point of identifying pictures. She told me "He doesn't have the mental capacity for speech or sign, I think we need to start working on a picture communication system"
IF she had told me she wanted to use a picture communication exchange system as a bridge to speech, I would have been okay. Maybe that's what she meant, but I remember exactly what she said, and "he doesn't have the mental capacity for speech or sign" is NOT a phrase any mother of just turned 2 year old boy should hear without some solid proof. I didn't say a word, I just took Austin by the hand and left. I remember thinking later I SHOULD have said something. Even if she did believe he truly didn't have the mental capacity, she shouldn't have said it like that. If she thought he didn't have the mental capacity at that moment, she could have said that. Even better, she could have found a way to phrase it that didn't make me want to hit her.
We went back to our pediatrician and I explained the situation with the chair and the spinning. "The things she says make me think she thinks he's autistic, and has diminished mental capacity. I just don't understand it, because ECI seemed to think it was just the language issue. Do you think we need to go to a developmental pediatrician? It's not like he spins around for hours or anything like that..." I stopped talking suddenly, realizing I was babbling and sounded a little frantic. The pediatrician laughed and said "Don't worry about it, let her worry about speech but don't listen to anything else she says. I have two boys and they'd spin all day if I let them. I really don't think it's autism, but I can refer you to a developmental pediatrician if it makes you feel better." We got the referral, and I left feeling better that at least his pediatrician seemed to think his behavior was normal.
The thing was, I didn't want to go to this person whose only accomplishment in a month of therapy had been to make Austin even quieter in therapy sessions and to make him not want to go the therapy.
This SLP said she first wanted to just observe Austin. Austin was right around 2 at the time. He was trying to find and push his boundaries, just like any other kid his age.
He wandered around, looking for things to play with, he knocked over a little chair, the SLP put it back up and he knocked it down again. (I wasn't allowed to tell him no) He found a little ball with velcro on it. He touched it hesitantly, dropped it in surprise, and then picked it up again. He didn't cooperate with the SLP at all. He spun in a circle for a moment while we talked. She looked at him very concernedly.
Finally, she told me "he has a lot of stims, he doesn't seem to know a chair is for sitting, not knocking down and he has tactile defensiveness. Next time, I'd like you to wait in the waiting room and I'll try to get him to imitate sounds"
I was suddenly longing for my twice a month visits from ECI, but I was willing to give this therapist a chance. I thought we'd give him a month.
After a couple of weeks, she told me we should stop trying to get him to imitate sounds and just try to get him to the point where he would point of identifying pictures. She told me "He doesn't have the mental capacity for speech or sign, I think we need to start working on a picture communication system"
IF she had told me she wanted to use a picture communication exchange system as a bridge to speech, I would have been okay. Maybe that's what she meant, but I remember exactly what she said, and "he doesn't have the mental capacity for speech or sign" is NOT a phrase any mother of just turned 2 year old boy should hear without some solid proof. I didn't say a word, I just took Austin by the hand and left. I remember thinking later I SHOULD have said something. Even if she did believe he truly didn't have the mental capacity, she shouldn't have said it like that. If she thought he didn't have the mental capacity at that moment, she could have said that. Even better, she could have found a way to phrase it that didn't make me want to hit her.
We went back to our pediatrician and I explained the situation with the chair and the spinning. "The things she says make me think she thinks he's autistic, and has diminished mental capacity. I just don't understand it, because ECI seemed to think it was just the language issue. Do you think we need to go to a developmental pediatrician? It's not like he spins around for hours or anything like that..." I stopped talking suddenly, realizing I was babbling and sounded a little frantic. The pediatrician laughed and said "Don't worry about it, let her worry about speech but don't listen to anything else she says. I have two boys and they'd spin all day if I let them. I really don't think it's autism, but I can refer you to a developmental pediatrician if it makes you feel better." We got the referral, and I left feeling better that at least his pediatrician seemed to think his behavior was normal.
The thing was, I didn't want to go to this person whose only accomplishment in a month of therapy had been to make Austin even quieter in therapy sessions and to make him not want to go the therapy.
Sunday, April 12, 2009
Things get really...interesting
Sooo, I get a few recommendations for a pediatrician and I try one. He's a good guy, he seems to not be afraid to take action, and seems sure of himself, but not arrogant.
I explain about Austin's history so far, and about my frustrations with ECI coming so infrequently. He agrees with me that it's not enough therapy, and refers us to a clinic for speech therapy twice a week.
I was so excited. Twice a week! We'd really start seeing some progress!
We went in for Austin's evaluation at the clinic...and the SLP (speech language pathologist) suggested day care as the fastest way to catch Austin up. "We can work with him here, but really I think day care is what he needs. They want to be like their little friends and it really pushes them to talk"
I should have just ran for the door then, and not come back.
Instead, I politely explained we were becoming involved in playgroups, and I'd think about daycare, but for now I'd just like the therapy.
I explain about Austin's history so far, and about my frustrations with ECI coming so infrequently. He agrees with me that it's not enough therapy, and refers us to a clinic for speech therapy twice a week.
I was so excited. Twice a week! We'd really start seeing some progress!
We went in for Austin's evaluation at the clinic...and the SLP (speech language pathologist) suggested day care as the fastest way to catch Austin up. "We can work with him here, but really I think day care is what he needs. They want to be like their little friends and it really pushes them to talk"
I should have just ran for the door then, and not come back.
Instead, I politely explained we were becoming involved in playgroups, and I'd think about daycare, but for now I'd just like the therapy.
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