Read the article first...
I'm not entirely sure on the background of this article, but it seems to be from back in 1965, and is about Dr. Lovaas and some of his methods. I found both the article and photos extremely disturbing, but the photos in particular made me sick to my stomach. I know that the whole Lovaas Method has changed since then, but boy... What a depressing, stomach turning read.
What do you think?
Saturday, March 7, 2009
Friday, March 6, 2009
Jaymes Vs. Big Pharma. This title dedicated to Age of Autism
5 Year old with Autism takes on big Pharma!
Ok, maybe not. But really,
Jaymes- 6
Clonidine Patch- 0
I love how Jaymes is on the patch, but unfortunately, I cannot keep the patch on Jaymes. He used up the first month's worth of patches in a week and a half, and I spoke to the psychiatrist's office and explained the situation. They called in another script, and the pharmacy did an admirable job overriding Medicaid's "Oh hell no, you already got your drugs for the month you drug seeking drug seeker". We decided to try the patch with an IV adhesive clear sticky patch over it.
It lasted one night and upon arriving home from school, was gone, gone gone. Put another on this afternoon, and tried another approach.
I took the patch in one hand, ready to stick on, and a random adhesive sticky in the other. At the same time, I stuck them both in different places, hoping he'd only realize he had the one big foam sticky on there and wouldn't notice the little teeny patch.
No luck. Immediately the foam sticky was torn off, with crazed giggling, and shoved brutally into the garbage can where he frantically buried it over and over so I could not retrieve it. Then, the moment my back was turned, off came the patch.
That boy. He's too smart for our own good. His patch free day was apparent, he was in that super-giggly-crazed-manic mode. Running around, blindly plowing into walls and doorways and mowing down his sister or the dogs. Laughing like mad at nothing I could really see. Occasional random bursts of crying and screaming, tossing himself on the floor.
You can tell when he's off the meds. I'm not pleased. I finally find the right med, the right delivery method.. And he won't flippin' wear it! How is that fair? YEARS of trial and error with the meds, there has got to be some way to make this work.
We need Jaymes on the patch. We love Jaymes on the patch. Jaymes is happier on the patch. Sierra doesn't get tormented. No crying fits. He sleeps. He cooperates.
This just royally sucks.
But he's still awesome, and I still love the snugglies out of him.
Ok, maybe not. But really,
Jaymes- 6
Clonidine Patch- 0
I love how Jaymes is on the patch, but unfortunately, I cannot keep the patch on Jaymes. He used up the first month's worth of patches in a week and a half, and I spoke to the psychiatrist's office and explained the situation. They called in another script, and the pharmacy did an admirable job overriding Medicaid's "Oh hell no, you already got your drugs for the month you drug seeking drug seeker". We decided to try the patch with an IV adhesive clear sticky patch over it.
It lasted one night and upon arriving home from school, was gone, gone gone. Put another on this afternoon, and tried another approach.
I took the patch in one hand, ready to stick on, and a random adhesive sticky in the other. At the same time, I stuck them both in different places, hoping he'd only realize he had the one big foam sticky on there and wouldn't notice the little teeny patch.
No luck. Immediately the foam sticky was torn off, with crazed giggling, and shoved brutally into the garbage can where he frantically buried it over and over so I could not retrieve it. Then, the moment my back was turned, off came the patch.
That boy. He's too smart for our own good. His patch free day was apparent, he was in that super-giggly-crazed-manic mode. Running around, blindly plowing into walls and doorways and mowing down his sister or the dogs. Laughing like mad at nothing I could really see. Occasional random bursts of crying and screaming, tossing himself on the floor.
You can tell when he's off the meds. I'm not pleased. I finally find the right med, the right delivery method.. And he won't flippin' wear it! How is that fair? YEARS of trial and error with the meds, there has got to be some way to make this work.
We need Jaymes on the patch. We love Jaymes on the patch. Jaymes is happier on the patch. Sierra doesn't get tormented. No crying fits. He sleeps. He cooperates.
This just royally sucks.
But he's still awesome, and I still love the snugglies out of him.
Twitty-ot
Get it? Twitter idiot= twitty-ot. You're supposed to laugh at my wit.
Ok, fine. Anyway, I finally joined after seeing that every other blogger I follow is doing it. Yes, I'd probably jump off a bridge if they were doing that too. You would too.
Soooo... How do I make friends? I could only find one person, and only because she has a little linky thing on her blog. I know Kelley and a few others are on there, how do I find them? I don't know anyone's email addresses!
What do I do exactly? Is this just a perpetual Facebook status update type thing? How can I not fail at Twitterdom? Help!
Oh and you can add me, pleassseeeee and save me the effort of finding you all! My email on there is amber @ dontbitethedog . net
I'm "dontbitethedog" I think?
Ok, fine. Anyway, I finally joined after seeing that every other blogger I follow is doing it. Yes, I'd probably jump off a bridge if they were doing that too. You would too.
Soooo... How do I make friends? I could only find one person, and only because she has a little linky thing on her blog. I know Kelley and a few others are on there, how do I find them? I don't know anyone's email addresses!
What do I do exactly? Is this just a perpetual Facebook status update type thing? How can I not fail at Twitterdom? Help!
Oh and you can add me, pleassseeeee and save me the effort of finding you all! My email on there is amber @ dontbitethedog . net
I'm "dontbitethedog" I think?
Thursday, March 5, 2009
I must just LIVE in LaLa Land
Because, well, I'm just THAT oblivious.
Last night Jaymes had a therapy session, and I brought the report I posted here yesterday to ask the therapist if she reallllly thought Jaymes was a bad as the evaluation report made it seem. She was at the evaluation, but for a very short time and I doubt she was involved in the parts that I felt most concerned about, but she's very honest and straightforward and I figured I'd get a decent answer from her.
I've found that any health professional you ask certain questions to will squirm and avoid answering the questions, and it's frustrated me for a long time. This was the first time I actually got a decent answer to the Two Big Questions (yes, they get an official title because I have asked them so many times and never gotten a satisfactory answer from anyone.). Namely, "How severe is he now" and "Will he ever really be normal". The second one is an idiotic question, and yet I'm always compelled to ask. I don't know what I'm expecting, honestly. Even I know the answer to that one.
Anyway, having shown the report to the therapist, she agreed that most of it was pretty accurate. She did say that it all depended on how he was acting, his mood and frustration level at the time of testing (which while relevant, is probably a nice way of making me not feel SO bad, because maybe he was just having a bad day that day) because those things can effect his testing.
Having gotten this far without much, if any, sugarcoating I asked question number of of the Two Big Questions. As expected there was a certain amount of "How do I answer this question without freaking Amber out" leading up to the inevitable.. But to her credit, she's the FIRST person in 5 years of my asking to actually answer! I cannot tell you how nice it is to finally ask the question and not leave the office fuming about once again not getting an answer. Where was this therapist when I first asked years ago and the pediatrician told me "Oh, we're not allowed to speculate on that" or the OT in Florida who told me "Well he's really too young to be able to say" or the psychiatrist back in Florida who said "There's no real way to measure that, don't worry about it." Oh I could go on and on and on. It's not like I really -wanted- to hear the truth, but I needed to and someone finally sucked it up and just told me. Therapists like that are the ones you respect the most.
Now like I said, I sort of wish I didn't ask, because really I wanted someone to tell me the truth, but I didn't really want to know the answer. I know, makes no sense, but that's the only way I can think to explain it. I have always looked at Jaymes, compared him to others I saw or met or read about in blogs, and kinda guessed that he was moderate in severity at worst. Her wording was something to the effect of "Well, he's pretty severe."
Why didn't I know this? Ok, maybe I did and didn't want to admit it. I don't know. No one ever expresses concern over Jaymes, it's always just business as usual at therapy and the doctors. The only times Jaymes is treated differently is at a store, where we get funny looks or at a friend's house when he starts acting out. Nobody looks sideways at Jaymes at therapy, because he is just like everyone else there. In that waiting room, there is a different crowd of parents. Not the prissy soccer moms who act shocked if your child starts screaming and flailing on the ground... No, we've got the parents who will pick someone else's kid up and calm them down. Everyone knows every kid there by name, everyone's friendly and pleasant. Too bad everyone wasn't like this. It's such a relief to be somewhere I'm not being judged, my child isn't being judged, where we can sit and chat and if one of the kids has a moment, or drools on the furniture, or does something else weird, no one says anything. It's all normal there.
Jaymes therapist had a lot of good points, particularly about not getting depressed over this new information. I'm trying not to be, I know it won't help Jaymes any. I guess it's just really a shock to see it on paper, in black and white, undeniable.
I worry about Jaymes... What happens to him if something happens to me? Images from that article about Trudy Steuernagel and her son Sky pop into my head, and it scares the hell out of me. Imagining Jaymes all alone, scared, without the one person who has always been there. He isn't attached to anyone like he is to me, but I won't live forever. I don't want to think about him being by himself someplace strange with no one who cares whether his blanket is on the right way or who cuts his sandwiches into cool shapes or who knows to let him turn the bedroom light on and off instead of doing it for him.
And then of course I get started thinking about us here at home. I know the therapists think we're godawful parents. Maybe we are. No one taught me what to do when Jaymes was born, very few people stepped forward to help me. Jason was one of those very few, but it seems that as jaymes ages, they get along less and less. Jaymes makes messes, Jason hates messes. Jason yells, Jaymes runs to me. Jason doesn't understand him. I'm too lenient. I let him get away with too much. But you know, sometimes I'm just too tired. I don't always have it in me to put him back in time-out 96 times. I don't always have the energy, emotionally, to deal with certain behaviors. So yes, sometimes I really do just sit here and hide on the internet while Jaymes rips apart the house... Because I AM TIRED. I want to be that perfect autism mommy, and in writing, i can play the game. I can do the research thing, I can maintain the website and blog because those things are relaxing for me. Dealing with tantrums and behaviors that not only are a problem for Jaymes and I, but which will get me in big trouble with Jason too... Not relaxing. Exhausting. I KNOW it's my job and I need to do it. Most of the time I do. But sometimes I can't, and I just sit here and punch keys and hide from it. I do the same thing when Jason and I fight. I have friends and readers and a life here online, and it's a great escape. Maybe too great, because I'm here too much.
Therapist was right about a lot of things, and she has this way of telling a person to get their shit together in a realllllly sweet, non-offensive way. Kinda impressive if you think about it, takes talent to be able to tell people things they don't want to hear in such a way that they leave with a good feeling and not a "she thinks I'm a crappy mom" feeling.
I do need to get out of the funk I've been in and lay down the law with Jaymes. I need to do it even if Jason gets mad at me for it, even if he tells me I'm being stupid or not doing it right. I need to stick to computer time before the kids wake up (like right now), during naps, or after they go to bed.
Anyway, I guess I need to stop ranting at this point. The reality is this: It's autism, it's here, get used to it. Don't deny it, don't whine about it, just do it.
Last night Jaymes had a therapy session, and I brought the report I posted here yesterday to ask the therapist if she reallllly thought Jaymes was a bad as the evaluation report made it seem. She was at the evaluation, but for a very short time and I doubt she was involved in the parts that I felt most concerned about, but she's very honest and straightforward and I figured I'd get a decent answer from her.
I've found that any health professional you ask certain questions to will squirm and avoid answering the questions, and it's frustrated me for a long time. This was the first time I actually got a decent answer to the Two Big Questions (yes, they get an official title because I have asked them so many times and never gotten a satisfactory answer from anyone.). Namely, "How severe is he now" and "Will he ever really be normal". The second one is an idiotic question, and yet I'm always compelled to ask. I don't know what I'm expecting, honestly. Even I know the answer to that one.
Anyway, having shown the report to the therapist, she agreed that most of it was pretty accurate. She did say that it all depended on how he was acting, his mood and frustration level at the time of testing (which while relevant, is probably a nice way of making me not feel SO bad, because maybe he was just having a bad day that day) because those things can effect his testing.
Having gotten this far without much, if any, sugarcoating I asked question number of of the Two Big Questions. As expected there was a certain amount of "How do I answer this question without freaking Amber out" leading up to the inevitable.. But to her credit, she's the FIRST person in 5 years of my asking to actually answer! I cannot tell you how nice it is to finally ask the question and not leave the office fuming about once again not getting an answer. Where was this therapist when I first asked years ago and the pediatrician told me "Oh, we're not allowed to speculate on that" or the OT in Florida who told me "Well he's really too young to be able to say" or the psychiatrist back in Florida who said "There's no real way to measure that, don't worry about it." Oh I could go on and on and on. It's not like I really -wanted- to hear the truth, but I needed to and someone finally sucked it up and just told me. Therapists like that are the ones you respect the most.
Now like I said, I sort of wish I didn't ask, because really I wanted someone to tell me the truth, but I didn't really want to know the answer. I know, makes no sense, but that's the only way I can think to explain it. I have always looked at Jaymes, compared him to others I saw or met or read about in blogs, and kinda guessed that he was moderate in severity at worst. Her wording was something to the effect of "Well, he's pretty severe."
Why didn't I know this? Ok, maybe I did and didn't want to admit it. I don't know. No one ever expresses concern over Jaymes, it's always just business as usual at therapy and the doctors. The only times Jaymes is treated differently is at a store, where we get funny looks or at a friend's house when he starts acting out. Nobody looks sideways at Jaymes at therapy, because he is just like everyone else there. In that waiting room, there is a different crowd of parents. Not the prissy soccer moms who act shocked if your child starts screaming and flailing on the ground... No, we've got the parents who will pick someone else's kid up and calm them down. Everyone knows every kid there by name, everyone's friendly and pleasant. Too bad everyone wasn't like this. It's such a relief to be somewhere I'm not being judged, my child isn't being judged, where we can sit and chat and if one of the kids has a moment, or drools on the furniture, or does something else weird, no one says anything. It's all normal there.
Jaymes therapist had a lot of good points, particularly about not getting depressed over this new information. I'm trying not to be, I know it won't help Jaymes any. I guess it's just really a shock to see it on paper, in black and white, undeniable.
I worry about Jaymes... What happens to him if something happens to me? Images from that article about Trudy Steuernagel and her son Sky pop into my head, and it scares the hell out of me. Imagining Jaymes all alone, scared, without the one person who has always been there. He isn't attached to anyone like he is to me, but I won't live forever. I don't want to think about him being by himself someplace strange with no one who cares whether his blanket is on the right way or who cuts his sandwiches into cool shapes or who knows to let him turn the bedroom light on and off instead of doing it for him.
And then of course I get started thinking about us here at home. I know the therapists think we're godawful parents. Maybe we are. No one taught me what to do when Jaymes was born, very few people stepped forward to help me. Jason was one of those very few, but it seems that as jaymes ages, they get along less and less. Jaymes makes messes, Jason hates messes. Jason yells, Jaymes runs to me. Jason doesn't understand him. I'm too lenient. I let him get away with too much. But you know, sometimes I'm just too tired. I don't always have it in me to put him back in time-out 96 times. I don't always have the energy, emotionally, to deal with certain behaviors. So yes, sometimes I really do just sit here and hide on the internet while Jaymes rips apart the house... Because I AM TIRED. I want to be that perfect autism mommy, and in writing, i can play the game. I can do the research thing, I can maintain the website and blog because those things are relaxing for me. Dealing with tantrums and behaviors that not only are a problem for Jaymes and I, but which will get me in big trouble with Jason too... Not relaxing. Exhausting. I KNOW it's my job and I need to do it. Most of the time I do. But sometimes I can't, and I just sit here and punch keys and hide from it. I do the same thing when Jason and I fight. I have friends and readers and a life here online, and it's a great escape. Maybe too great, because I'm here too much.
Therapist was right about a lot of things, and she has this way of telling a person to get their shit together in a realllllly sweet, non-offensive way. Kinda impressive if you think about it, takes talent to be able to tell people things they don't want to hear in such a way that they leave with a good feeling and not a "she thinks I'm a crappy mom" feeling.
I do need to get out of the funk I've been in and lay down the law with Jaymes. I need to do it even if Jason gets mad at me for it, even if he tells me I'm being stupid or not doing it right. I need to stick to computer time before the kids wake up (like right now), during naps, or after they go to bed.
Anyway, I guess I need to stop ranting at this point. The reality is this: It's autism, it's here, get used to it. Don't deny it, don't whine about it, just do it.
Wednesday, March 4, 2009
Evaluation results and one oblivious mommy
Back in October, Jaymes had an evaluation by the Augmentative Communication people at his therapy place, because I thought a speech device might help him communicate more effectively and alleviate some of his frustration. It was a really long thing, with a lot of different people. His OT was there, and then the person who did Jaymes original speech eval when we first moved to NC, though I'm not entirely sure what her title there is. We also had a psychologist (psychiatrist? I can't remember and am too lazy to look) and Jaymes developmental pediatrician too. They did a lot of question asking, tried out some speech devices with Jaymes, and did another one of the Vineland test thingies. I cannot count how many of those I have filled out in the last 4 years!
Anyway, I got the evaluation results back today in the mail, and some of it really shocked me. I guess I was not as negative about things as I thought, because I did not expect to see "scores" like the ones Jaymes got. I almost want to think they messed up and it's not right, it just seems so... Low.
On the plus side, there was some humor to be found in the report to balance out my "Holy hell, he's -that- bad" reaction. I'm guessing they use a predone evaluation and then just edit it and add in names and specifics to save time, which would explain why Jaymes was frequently referred to as "Jayme" and "she" or "her". One sentence made me laugh out loud, said something along the lines of "he very rarely points of objects in a book, as they are named for her, but she will spontaneously respond to her favorite items."
I'm not making fun of the people who did this report, lord knows I typo often enough and I thought it was an extremely well done, in depth look at Jaymes from an outsider's view which I appreciated immensely... But you have to admit, it IS kinda funny. Maybe I'm just immature. Probably.
Anyway... I'm going to type the whole friggin thing out because I want to use it on the website as an example. I'm just going to take out names and things (although you all already know Jaymes--er J's name). Bear with me, this'll take awhile. Luckily, Jaymes is at school, Sierra has his trains to play with (normally he won't let her touch them), and I have a cup of hot cranberry apple tea. Yummm.
Here we go... Typos corrected because I'm anal like that. My thoughts in red.
"Pediatric Outpatient Therapy Program Augmentative Communication and Assistive Learning Clinc...
Evaluation findings: (psychologist)
J is brought in here today by his mother, who reports that he has made progress in the area of speech/language, he continues to need help with expressive language development. As recently as a year ago, J only screamed to communicate. Since that time, he has begun to babble expressively, identify colors, label animals, and name letters of the alphabet. If he knows the word for the item he wants he will say the word to request the item (examples include "snack" "fruit snack" "cracker" "pizza" "drink" "popsicle" "outside"). Parents have been encouraging him to say "I want" when making requests, and he will often comply with their prompts. J echoes what others say. His mother reports that often the sentences he generates do not make sense.
Presently, J is enrolled in a special needs PreK at C. Elementary. He receives speech therapy at school with K.M. He receives additional therapies at the ... Pediatric Therapy Program including speech/language treatment with S, occupational therapy with R, and physical therapy with A. His last psych evaluation was in December 2007 with the school system.
J lives with his mother, stepfather, and 2 year old sister in the family's home in ... His father works in mental health and his mother cares for the family and maintains an educational blog about raising a child with autism. (Amber in: Yay, my blog got a mention!) J's medical needs are covered by ... He is on the waiting list for CAP-Medwaiver program. The family has a computer in the home. Windows Vista is the operating system. (Amber in: I'm not sure why that mattered, and BTW have i ever mentioned my hatred for Windows Vista? XP for the win.)
Behavioral Observations (team)
J is a neatly groomed boy with a relatively large head (Amber in: This cracked me up so much I had to share it with Jason. I don't know why but the wording just killed me. Still does. Don't mind me, I'll keep typing while choking on cranberry apple tea) dark hair, and distinctive eyes. He exhibited some distress in the transition from the waiting room to the evaluation office as evidenced by agitated vocalizations and facial expressions. He jabbered expressively once in the office, moving quickly to pursue items of interest. He clung to a blanket which his mother reports functions as "his off switch". (Amber in: Kinda weird to be quoted on such an offhand comment. maybe I should choose my words more carefully.)
Health/Medical Evaluation: (Dr. Developmental Pediatrician (who Amber thinks is just awesome but who Jaymes never gets to see anymore))
J was seen in my office for developmental pediatrics consultation on 9/4/08. The report from that visit was reviewed and the mother provided updated clinical information for this assessment. The total contact time was 15 minutes- all counseling and coordination of care.
J was diagnosed with autism by 2 years of age. There is no known etiology for his development disorder despite previous neurological and genetic assessment. He was exposed to maternal Paxil during gestation. No family history of autism spectrum disorders. J has been managed for clincial seizures in the past although several EEG's and a 24 hour video EEG were normal. The most recent MRI brian scan (march 2008) revealed subtle findings of left mesial temporal sclerosis. Treated with several anticonvulsant medications from 2 years of age until weaning from Depakote this past summer. No change in behaviors as noted by mother.
Primary care by Dr. General Pediatrician at ... Pediatrics in ... Several sets of tympanostomy tubes in the past and an adenoidectomy. Tubes are still in place. Previous audiologic assessments have been difficult to interpret. however there are no concerns about functional hearing status at the present time. The mother has no concerns about functional vision responses. A previous allergy/immunology assessment documented mild IgG deficiency with normal IgM and IgA. Chronic diarrhea has been investigated with lab work and upper and lower endoscopy.
J has a long and significant history of disruptive behaviors- starting as a toddler- that have interfered with home life and specialized treatment services. Specifically, frequent outbursts with rage behaviors and destructiveness/aggressiveness/self-injurious behavior. Disordered sleep as well. Risperdal started at very large doses at 3 yo but now given only on a PRN basis. A brief Prozac trial earlier this year resulted in an exascerbation of target behaviors. After the office visit with me one month ago, trials of Adderal XR and Ritalin LA resulted in rebound irritability and an exascerbation of daytime behaviors/adverse sleep effects, respectively.
The medical treatment plan is to start scheduled treatment with Risperdal at age and size appropriate doses- starting at .125mg daily, then up to .125 BID after one week. The possible adjunctive use of Clonidine was discussed with the mother who is reluctant at this point. (Amber in: This is reallly outdated med info, so ignore it. Hard to keep it up to date with how often it changes!)
Psychological evaluation (psychologist)
J was last evaluated through his school placement in December 2007. Mother reports today that J has made nice progress since that evaluation, having begun talking, learned most of his letters (upper and lowercase), his colors, his animals. Formal psychological assessment was not attempted today due to J's trouble sitting still and tolerating other-control of items of interest. Please see adaptive behavior scores which follow for an estimate of his current levels of functioning.
Adaptive Behavior Assessment (psychologist)
J's adaptive skills were assessed using the Vineland Adaptive Behavior Scales-II (V ABS). The Vineland- II describes a child's performance of day to day activities necessary to care for one's self and to get along with others. Adaptive behavior as measured by these scales describes what the child does, rather than what the child is capable of doing. It consists of domains, each describing a particular area of development. J's mother was the informant for this examiner.
Vineland Adaptive Behavior Scares-II- Interview Edition
(Amber in: I don't know how to do tables on Blogger, so I'm just going to write out each domain, score, age equivalent, and adaptive level. Bear in mind while reading these that Jaymes is 5 years and 3 months old)
Communication: (Standard score 52, J's score 22)
Daily Living Skills: (standard score 53, J's score 23)
Socialization: (standard score 51, J's score 19, assuming I added correctly)
Motor Skills: (standard score 59, J's score 16)
(Amber in: I was actually really surprised he got such low scores here, especially in gross motor.)
Gross: Score:8. Age Equivalent:1 year 7 months
Fine: Score:8. Age Equivalent: 2 years 3 months
Everything except written communication and domestic daily living skills scored in the " low" level. Those 2 scored in "Below average" which confuses me anyway because he can't write and he destroys most everything he touches! Go figure.
Now, take the above with a grain of salt, as I'm not sure I interpreted it correctly.
Next page...
"J's overall communication skills fell in the low range. Receptively, J sometimes turns his eyes and head toward environmental sounds and the sound of his parent's voice. He demonstrates clear understanding of the word no but only seems to sometimes understand the word yes. J reportedly does not like books and will not attend to a story for any length of time. He very rarely points to objects in a book as they are named for him., though he will spontaneously point to his favorite items. He sometimes listens and follows simple one step directions. He does not yet follow 2 step directions. (Amber in: He does now, sort of.) Expressively, J is described by his mother as "newly echolalic" (Amber in: I KNOW I didn't say it in those words, that makes me sound waaaaaay smarter than I probably sounded that day.) J produces short phrases. he calls everyone (Only men and not anymore) daddy and Si-si (sister's name) but does not state his own name when asked. When presented with a choice of 2 items, he takes both rather than choosing the item he wants by pointing. He waves "bye" to his mother at night, but does not wave to others as they come and go throughout the day. He asks questions by changing the inflections of the words or simple phrases ("I eat?" "go bye-bye?" "Go outside?")
Speech/language Evaluation: (speech evaluation lady who does NOT typo!)
J presented today with his mother to explore speech generating devices to aide in his overall communication skills. J is communicating mainly with gestures and some rote phrasing. J's mother reports that he will lead his family to the desired object or independently get the object of desire. Jaymes currently has 5-1o single words which are used mainly in rote phrasing. Echolalia was heard throughout the evaluation and was noted by mother. Minimal use of spontaneous utterances is reported to include "I'm sorry". J verbalized during the session, however many of his words were self directed or in imitation of his mother or therapists. according to his mother, J is becoming more frustrated during communication exchanges and can be aggressive and overly emotional when not understood.
Initially, during today's evaluation, a static voice output device, specifically the Tech Talk 8, was used. This device was offered during child directed activities and activities that J's mother reported were motivating to J. J did not appear overly interested in this type of augmentative device and his interest in computers and led the therapist to explore more dynamic display speech generating devices. He was able to use the dynamic display device to sequence a three symbol utterance to request "I want __" consistantly across most activities after an initial model was given. Notably, J imitated the computer production of his own self generated utterances. The computer production of a self generated utterance is a strong model for the user. It can be more effective than another person's model since the child is actually formulated the message independently and is imitating the auditory feedback of that formulated message. In some cases, this can promote the use of spontaneous oral language.
J displayed successful use of the dynamic display device in structured activities as well as opportunities to use the device in less structured, more spontaneous activities. Pictures were limited on a screen size accomodating 32 pictures, where only 8-10 pictures were visible. J demonstrated the ability to use a single finger target method with a keyguard. Multiple fingers or whole hand was used on occasion. J's overall attention span was limited and it was necessary to redirect J's focus or remodel the target often using the device within an activity.
Occupational Therapy Evaluation: (J's OT)
J was trialed with a Vanguard. he was able to isolate his fingers to access the icons, but he required a keyguard to enhance the physical boundaries of the icons. He did require initial hand over hand assistance, and he attempted to remove the picture icons. However, after practice he was able to demonstrate an understanding of the cause and effect with the device. He is able to visually scan the board. He is able to cross the midline with both upper extremities.
J presented with a willingness to participate in the trial and to follow directions. He did require redirection at times back to the task. J would attempt to imitate the voice output of the board.
He demonstrated some hyperactivity during the testing. No self stimulation behaviors were noted during this testing session.
J would benefit from an augmentative communication device to enable him to effectively communicate with others in his home, school, and community environments. To access a communication device, J will require a keyguard to improve the physical boundaries of the icons. Also he will need icons he cannot remove. This therapist concurs with the recommendations made by this team.
Team Recommendations:
Based on today's evaluation, J is a strong candidate to use a speech generating communication device. He needs a dynamic display device, voice output device with a keyguard for accuracy. He is able to handle a maximum of 6-10 icons initially on a page to communicate more independently across his environments. There are several devices that J and his treatment team should consider and potentially uitlize loaner programs to familiarize themselves with the options. "
WOW, that took a long, long time to type. Good grief. Anyway, I guess I just didn't realize how low some of his skills were. I mean, I know Sierra is Waaaaaaay ahead of any of his skills.. But it just didn't register.
I still don't know what the docs and therapists think the severity of his autism is, and they won't give me a strsight answer so who knows. Based on the scores I saw, i'd almost hazard to say severe, but I don't want him to be, so I think it's easier to go with moderate. Sounds less... horrible. I dunno.
Anyway, I got the evaluation results back today in the mail, and some of it really shocked me. I guess I was not as negative about things as I thought, because I did not expect to see "scores" like the ones Jaymes got. I almost want to think they messed up and it's not right, it just seems so... Low.
On the plus side, there was some humor to be found in the report to balance out my "Holy hell, he's -that- bad" reaction. I'm guessing they use a predone evaluation and then just edit it and add in names and specifics to save time, which would explain why Jaymes was frequently referred to as "Jayme" and "she" or "her". One sentence made me laugh out loud, said something along the lines of "he very rarely points of objects in a book, as they are named for her, but she will spontaneously respond to her favorite items."
I'm not making fun of the people who did this report, lord knows I typo often enough and I thought it was an extremely well done, in depth look at Jaymes from an outsider's view which I appreciated immensely... But you have to admit, it IS kinda funny. Maybe I'm just immature. Probably.
Anyway... I'm going to type the whole friggin thing out because I want to use it on the website as an example. I'm just going to take out names and things (although you all already know Jaymes--er J's name). Bear with me, this'll take awhile. Luckily, Jaymes is at school, Sierra has his trains to play with (normally he won't let her touch them), and I have a cup of hot cranberry apple tea. Yummm.
Here we go... Typos corrected because I'm anal like that. My thoughts in red.
"Pediatric Outpatient Therapy Program Augmentative Communication and Assistive Learning Clinc...
Evaluation findings: (psychologist)
J is brought in here today by his mother, who reports that he has made progress in the area of speech/language, he continues to need help with expressive language development. As recently as a year ago, J only screamed to communicate. Since that time, he has begun to babble expressively, identify colors, label animals, and name letters of the alphabet. If he knows the word for the item he wants he will say the word to request the item (examples include "snack" "fruit snack" "cracker" "pizza" "drink" "popsicle" "outside"). Parents have been encouraging him to say "I want" when making requests, and he will often comply with their prompts. J echoes what others say. His mother reports that often the sentences he generates do not make sense.
Presently, J is enrolled in a special needs PreK at C. Elementary. He receives speech therapy at school with K.M. He receives additional therapies at the ... Pediatric Therapy Program including speech/language treatment with S, occupational therapy with R, and physical therapy with A. His last psych evaluation was in December 2007 with the school system.
J lives with his mother, stepfather, and 2 year old sister in the family's home in ... His father works in mental health and his mother cares for the family and maintains an educational blog about raising a child with autism. (Amber in: Yay, my blog got a mention!) J's medical needs are covered by ... He is on the waiting list for CAP-Medwaiver program. The family has a computer in the home. Windows Vista is the operating system. (Amber in: I'm not sure why that mattered, and BTW have i ever mentioned my hatred for Windows Vista? XP for the win.)
Behavioral Observations (team)
J is a neatly groomed boy with a relatively large head (Amber in: This cracked me up so much I had to share it with Jason. I don't know why but the wording just killed me. Still does. Don't mind me, I'll keep typing while choking on cranberry apple tea) dark hair, and distinctive eyes. He exhibited some distress in the transition from the waiting room to the evaluation office as evidenced by agitated vocalizations and facial expressions. He jabbered expressively once in the office, moving quickly to pursue items of interest. He clung to a blanket which his mother reports functions as "his off switch". (Amber in: Kinda weird to be quoted on such an offhand comment. maybe I should choose my words more carefully.)
Health/Medical Evaluation: (Dr. Developmental Pediatrician (who Amber thinks is just awesome but who Jaymes never gets to see anymore))
J was seen in my office for developmental pediatrics consultation on 9/4/08. The report from that visit was reviewed and the mother provided updated clinical information for this assessment. The total contact time was 15 minutes- all counseling and coordination of care.
J was diagnosed with autism by 2 years of age. There is no known etiology for his development disorder despite previous neurological and genetic assessment. He was exposed to maternal Paxil during gestation. No family history of autism spectrum disorders. J has been managed for clincial seizures in the past although several EEG's and a 24 hour video EEG were normal. The most recent MRI brian scan (march 2008) revealed subtle findings of left mesial temporal sclerosis. Treated with several anticonvulsant medications from 2 years of age until weaning from Depakote this past summer. No change in behaviors as noted by mother.
Primary care by Dr. General Pediatrician at ... Pediatrics in ... Several sets of tympanostomy tubes in the past and an adenoidectomy. Tubes are still in place. Previous audiologic assessments have been difficult to interpret. however there are no concerns about functional hearing status at the present time. The mother has no concerns about functional vision responses. A previous allergy/immunology assessment documented mild IgG deficiency with normal IgM and IgA. Chronic diarrhea has been investigated with lab work and upper and lower endoscopy.
J has a long and significant history of disruptive behaviors- starting as a toddler- that have interfered with home life and specialized treatment services. Specifically, frequent outbursts with rage behaviors and destructiveness/aggressiveness/self-injurious behavior. Disordered sleep as well. Risperdal started at very large doses at 3 yo but now given only on a PRN basis. A brief Prozac trial earlier this year resulted in an exascerbation of target behaviors. After the office visit with me one month ago, trials of Adderal XR and Ritalin LA resulted in rebound irritability and an exascerbation of daytime behaviors/adverse sleep effects, respectively.
The medical treatment plan is to start scheduled treatment with Risperdal at age and size appropriate doses- starting at .125mg daily, then up to .125 BID after one week. The possible adjunctive use of Clonidine was discussed with the mother who is reluctant at this point. (Amber in: This is reallly outdated med info, so ignore it. Hard to keep it up to date with how often it changes!)
Psychological evaluation (psychologist)
J was last evaluated through his school placement in December 2007. Mother reports today that J has made nice progress since that evaluation, having begun talking, learned most of his letters (upper and lowercase), his colors, his animals. Formal psychological assessment was not attempted today due to J's trouble sitting still and tolerating other-control of items of interest. Please see adaptive behavior scores which follow for an estimate of his current levels of functioning.
Adaptive Behavior Assessment (psychologist)
J's adaptive skills were assessed using the Vineland Adaptive Behavior Scales-II (V ABS). The Vineland- II describes a child's performance of day to day activities necessary to care for one's self and to get along with others. Adaptive behavior as measured by these scales describes what the child does, rather than what the child is capable of doing. It consists of domains, each describing a particular area of development. J's mother was the informant for this examiner.
Vineland Adaptive Behavior Scares-II- Interview Edition
(Amber in: I don't know how to do tables on Blogger, so I'm just going to write out each domain, score, age equivalent, and adaptive level. Bear in mind while reading these that Jaymes is 5 years and 3 months old)
Communication: (Standard score 52, J's score 22)
- Receptive: Score: 6. Age equivalent: 1 year, 1 month
- Expressive: Score: 6. Age Equivalent: 1 year 4 months
- Written: Score: 10. Age Equivalent: 2 years 5 months
Daily Living Skills: (standard score 53, J's score 23)
- Personal (self care): Score: 7. Age Equivalent:1 year 4 months
- Domestic (taking care of one's own things): Score: 10. Age Equivalent: 1 year 10 months
- Community (skills needed to live in the community): score 6. Age Equivalent: Less than one month (WTF?)
Socialization: (standard score 51, J's score 19, assuming I added correctly)
- Interpersonal relationships(How he relates to others): Score: 5. Age Equivalent: 2 months
- Play and leisure time(assesses play and use of leisure time): Score: 6. Age Equivalent: 6 months
- Coping skills (adapting to social situations and social customs): Score: 8. Age Equivalent: 10 months
Motor Skills: (standard score 59, J's score 16)
(Amber in: I was actually really surprised he got such low scores here, especially in gross motor.)
Gross: Score:8. Age Equivalent:1 year 7 months
Fine: Score:8. Age Equivalent: 2 years 3 months
Everything except written communication and domestic daily living skills scored in the " low" level. Those 2 scored in "Below average" which confuses me anyway because he can't write and he destroys most everything he touches! Go figure.
Now, take the above with a grain of salt, as I'm not sure I interpreted it correctly.
Next page...
"J's overall communication skills fell in the low range. Receptively, J sometimes turns his eyes and head toward environmental sounds and the sound of his parent's voice. He demonstrates clear understanding of the word no but only seems to sometimes understand the word yes. J reportedly does not like books and will not attend to a story for any length of time. He very rarely points to objects in a book as they are named for him., though he will spontaneously point to his favorite items. He sometimes listens and follows simple one step directions. He does not yet follow 2 step directions. (Amber in: He does now, sort of.) Expressively, J is described by his mother as "newly echolalic" (Amber in: I KNOW I didn't say it in those words, that makes me sound waaaaaay smarter than I probably sounded that day.) J produces short phrases. he calls everyone (Only men and not anymore) daddy and Si-si (sister's name) but does not state his own name when asked. When presented with a choice of 2 items, he takes both rather than choosing the item he wants by pointing. He waves "bye" to his mother at night, but does not wave to others as they come and go throughout the day. He asks questions by changing the inflections of the words or simple phrases ("I eat?" "go bye-bye?" "Go outside?")
Speech/language Evaluation: (speech evaluation lady who does NOT typo!)
J presented today with his mother to explore speech generating devices to aide in his overall communication skills. J is communicating mainly with gestures and some rote phrasing. J's mother reports that he will lead his family to the desired object or independently get the object of desire. Jaymes currently has 5-1o single words which are used mainly in rote phrasing. Echolalia was heard throughout the evaluation and was noted by mother. Minimal use of spontaneous utterances is reported to include "I'm sorry". J verbalized during the session, however many of his words were self directed or in imitation of his mother or therapists. according to his mother, J is becoming more frustrated during communication exchanges and can be aggressive and overly emotional when not understood.
Initially, during today's evaluation, a static voice output device, specifically the Tech Talk 8, was used. This device was offered during child directed activities and activities that J's mother reported were motivating to J. J did not appear overly interested in this type of augmentative device and his interest in computers and led the therapist to explore more dynamic display speech generating devices. He was able to use the dynamic display device to sequence a three symbol utterance to request "I want __" consistantly across most activities after an initial model was given. Notably, J imitated the computer production of his own self generated utterances. The computer production of a self generated utterance is a strong model for the user. It can be more effective than another person's model since the child is actually formulated the message independently and is imitating the auditory feedback of that formulated message. In some cases, this can promote the use of spontaneous oral language.
J displayed successful use of the dynamic display device in structured activities as well as opportunities to use the device in less structured, more spontaneous activities. Pictures were limited on a screen size accomodating 32 pictures, where only 8-10 pictures were visible. J demonstrated the ability to use a single finger target method with a keyguard. Multiple fingers or whole hand was used on occasion. J's overall attention span was limited and it was necessary to redirect J's focus or remodel the target often using the device within an activity.
Occupational Therapy Evaluation: (J's OT)
J was trialed with a Vanguard. he was able to isolate his fingers to access the icons, but he required a keyguard to enhance the physical boundaries of the icons. He did require initial hand over hand assistance, and he attempted to remove the picture icons. However, after practice he was able to demonstrate an understanding of the cause and effect with the device. He is able to visually scan the board. He is able to cross the midline with both upper extremities.
J presented with a willingness to participate in the trial and to follow directions. He did require redirection at times back to the task. J would attempt to imitate the voice output of the board.
He demonstrated some hyperactivity during the testing. No self stimulation behaviors were noted during this testing session.
J would benefit from an augmentative communication device to enable him to effectively communicate with others in his home, school, and community environments. To access a communication device, J will require a keyguard to improve the physical boundaries of the icons. Also he will need icons he cannot remove. This therapist concurs with the recommendations made by this team.
Team Recommendations:
Based on today's evaluation, J is a strong candidate to use a speech generating communication device. He needs a dynamic display device, voice output device with a keyguard for accuracy. He is able to handle a maximum of 6-10 icons initially on a page to communicate more independently across his environments. There are several devices that J and his treatment team should consider and potentially uitlize loaner programs to familiarize themselves with the options. "
WOW, that took a long, long time to type. Good grief. Anyway, I guess I just didn't realize how low some of his skills were. I mean, I know Sierra is Waaaaaaay ahead of any of his skills.. But it just didn't register.
I still don't know what the docs and therapists think the severity of his autism is, and they won't give me a strsight answer so who knows. Based on the scores I saw, i'd almost hazard to say severe, but I don't want him to be, so I think it's easier to go with moderate. Sounds less... horrible. I dunno.
Unpatched
Who was it that said that good things never last? So much for the wonderful, happy, snuggly, sweet Jaymes on the patch... So much for the doctor who told me "no child can get these off, they can't reach."
Bull! He can reach every inch of his back, including between the shoulder blades. The patch never had a chance. Patch #1 lasted 4 days. Patch #2 lasted another 3 days. Patch #3, 1 day. Patch #4, 2 days.
Doesn't matter how high I put it, how low I put it, how many layers of sticky adhesive bandage I cover it with. Doesn't matter if i leave it alone and just have the tiny little path there. He knows it's there, and he wants if OFF. He's crafty, doesn't pick it off while I'm in the room, and tries to hide the thing when he does get it off. Patch #1 was never found. #2 and #3 were found in the bathroom and #4 in the living room.
And of course, I only had a tiny bit of Clonidine in pill form, and cannot get the doctor to call me back. I bet Jaymes' teachers will have a lovely day today, and I feel terrible about it, but there's nothing I can do! I also son't think he's supposed to go off the meds cold turkey, but if no one will call me back, what am I supposed to do?
The home health nurse came out yesterday to do Jaymes 60 day check so he can continue to get his diapers delivered... she had a good idea: Take the clear stick adhesive patches from IV kits and cover the patch with those. Those things are impossible to get off, even when it's right there on your arm in plain sight. Seems like it would take days of effort for Jaymes to get that off his back. However, to try that, I need more patches.
Here's the question... Will insurance cover another months worth of patches, given that Jaymes just whizzed through a months worth in less than 2 weeks? I hope I hope I hope. i want the patch back on him ASAP, I want my sweet lil man to stay sweet. He was doing sooo good.
Couple days ago, he read a storybook with me! First time in forever, no screaming or squirming or wanting to get away. He sat on my lap and pointed out some of the farm animals as I read. It was only a 5 minute read, so not a long time and he really only knew a few, the rest he echoed after I said them.. But still. jaymes sat for a book to be read, and enjoyed it. Score for mommy!
Bull! He can reach every inch of his back, including between the shoulder blades. The patch never had a chance. Patch #1 lasted 4 days. Patch #2 lasted another 3 days. Patch #3, 1 day. Patch #4, 2 days.
Doesn't matter how high I put it, how low I put it, how many layers of sticky adhesive bandage I cover it with. Doesn't matter if i leave it alone and just have the tiny little path there. He knows it's there, and he wants if OFF. He's crafty, doesn't pick it off while I'm in the room, and tries to hide the thing when he does get it off. Patch #1 was never found. #2 and #3 were found in the bathroom and #4 in the living room.
And of course, I only had a tiny bit of Clonidine in pill form, and cannot get the doctor to call me back. I bet Jaymes' teachers will have a lovely day today, and I feel terrible about it, but there's nothing I can do! I also son't think he's supposed to go off the meds cold turkey, but if no one will call me back, what am I supposed to do?
The home health nurse came out yesterday to do Jaymes 60 day check so he can continue to get his diapers delivered... she had a good idea: Take the clear stick adhesive patches from IV kits and cover the patch with those. Those things are impossible to get off, even when it's right there on your arm in plain sight. Seems like it would take days of effort for Jaymes to get that off his back. However, to try that, I need more patches.
Here's the question... Will insurance cover another months worth of patches, given that Jaymes just whizzed through a months worth in less than 2 weeks? I hope I hope I hope. i want the patch back on him ASAP, I want my sweet lil man to stay sweet. He was doing sooo good.
Couple days ago, he read a storybook with me! First time in forever, no screaming or squirming or wanting to get away. He sat on my lap and pointed out some of the farm animals as I read. It was only a 5 minute read, so not a long time and he really only knew a few, the rest he echoed after I said them.. But still. jaymes sat for a book to be read, and enjoyed it. Score for mommy!
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