I got the full 12 page report finally and as always it was hard to read. The evaluation team was comprised of two PhD psychologists, a SLP, and two doctoral psychology interns.
The behavioral observations noted:
-he had difficulty maintaining conversation outside of his interest range
-he lacked awareness of nonverbal cues
-his affect was exaggerated
Ben's eye contact was inconsistent and not integrated with speech
Cognitive functioning....He was given the Differential Abilities Scale, II. His overall score was a 105, 63rd percentile, average range, but inside each domain, his scores seemed inconsistent to me. In the nonverbal domain, there were two subtests--he was in the 73rd percentile on one (picture similarities) and the 38th percentile on the other (matrices), which averages his scores in that domain to the 58th percentile. The numbers were similar for the verbal domain.
Autism Assessment used the ADOS-II....Some notes from that bit....
--"Although Ben produced some relatively complex speech, recurrent grammatical errors were noted."
--voice was high in pitch
--utterances sounded stereotyped
--"it was hard to follow his reporting of previous events, as he tended to start with a true event and morph it into a make believe story."
--"it was difficult to build a conversation with Ben"
--frequent mislabeling of emotions in a book
--rigidity during tasks, having to organize blocks and puzzle pieces
--sensory seeking behavior, such as rubbing his arms and legs observed, sitting perched on his toes in his seat, and tensing his hands and fingers
Diagnosis--autism spectrum disorder in the mild range
Showing posts with label developmental delays. Show all posts
Showing posts with label developmental delays. Show all posts
Thursday, October 10, 2013
Thursday, May 2, 2013
This post brought to you by the letters D and A.
In February, I wrote about Ben's first appointment for a developmental screening. He had his second appointment in March, and I got feedback from the psychologist on April 11th. April was a crazy month; we celebrated 10 birthdays for different kids, started Tball (2 games a week including 7:30pm Friday night games), and had Ben's tonsils out. That is not the reason why I have not blogged about the feedback session.
Denial isn't just a river in Egypt. There is the first D word, but there are two more coming. I guess it cannot be true denial as I sought out the evaluation after being told a year and a half ago that he likely wasn't on the autism spectrum. Of course, his pediatrician in Alaska told us a year ago to have him re-evaluated by another source, so I did have some reason to seek out a second opinion.
So April 11th has become our family's 2nd diagnosis day (November 3rd is our first). Rate of autism is currently 1 in 50 children. Rate in siblings is 1 in 5. Rate in this household is 2 in 2. The diagnosis is Autism Spectrum Disorder, based on the upcoming changes to the DSM, but otherwise it would be the same as Liam's, PDD-NOS.
The third D is doubt. Unfortunately, the psychologist who evaluated him was crappy and her report and pretty crappy. Ben is on the waiting list to be evaluated by UNC Chapel Hill, so hopefully that will give me some closure.
I am afraid that people will doubt the validity of Liam's diagnosis. Generally, I'd say Ben is higher functioning than Liam is. On a day to day basis, people notice Ben's delays more since he has not received the intensive help that Liam has.
So what led the psychologist to apply the A word, autism to Ben? Snippets from the report:
--Continued potty training issues
--high pain tolerance
--"his speech was notably inarticulate and difficult to understand at times"
--"repetitive language was observed, he repeated :so soft" four times while touching a doll"
--when asked to describe another doll, he answered brown four times
--"there was little sustained reciprocal communication"
--most of Ben's verbalizations were requests for help
--his scores of the Vineland were higher than only 7% of same aged peers and his scores on socialization were in the delayed range.
--he would not engage in non-preferred activities or those directed by examiner
--his play had a repetitive quality
Denial isn't just a river in Egypt. There is the first D word, but there are two more coming. I guess it cannot be true denial as I sought out the evaluation after being told a year and a half ago that he likely wasn't on the autism spectrum. Of course, his pediatrician in Alaska told us a year ago to have him re-evaluated by another source, so I did have some reason to seek out a second opinion.
So April 11th has become our family's 2nd diagnosis day (November 3rd is our first). Rate of autism is currently 1 in 50 children. Rate in siblings is 1 in 5. Rate in this household is 2 in 2. The diagnosis is Autism Spectrum Disorder, based on the upcoming changes to the DSM, but otherwise it would be the same as Liam's, PDD-NOS.
The third D is doubt. Unfortunately, the psychologist who evaluated him was crappy and her report and pretty crappy. Ben is on the waiting list to be evaluated by UNC Chapel Hill, so hopefully that will give me some closure.
I am afraid that people will doubt the validity of Liam's diagnosis. Generally, I'd say Ben is higher functioning than Liam is. On a day to day basis, people notice Ben's delays more since he has not received the intensive help that Liam has.
So what led the psychologist to apply the A word, autism to Ben? Snippets from the report:
--Continued potty training issues
--high pain tolerance
--"his speech was notably inarticulate and difficult to understand at times"
--"repetitive language was observed, he repeated :so soft" four times while touching a doll"
--when asked to describe another doll, he answered brown four times
--"there was little sustained reciprocal communication"
--most of Ben's verbalizations were requests for help
--his scores of the Vineland were higher than only 7% of same aged peers and his scores on socialization were in the delayed range.
--he would not engage in non-preferred activities or those directed by examiner
--his play had a repetitive quality
Saturday, January 26, 2013
Just when I thought I knew everything about SPD
In the summer of 2009, it became clear that something was off with Liam's development and I threw myself into research, and most of it focused on Sensory Processing Disorder (SPD). I learned there are actually 8 senses. Then Liam was diagnosed with PDD-NOS and I remained aware of SPD but started researching other things as well.
In fall 2010, I became worried about Ben and blogged about it: http://routhierfam.blogspot.com/2010/11/it-is-probably-nothing.html
Obviously, it wasn't nothing. Ben started Early Intervention and a year later was evaluated by a developmental pediatrician, who confirmed Ben has SPD and is at risk for a future diagnosis and recommended speech therapy, OT, ABA, and social skills groups. Without the autism diagnosis and without his delays being severe, we have been unable to secure much of the recommended treatment.
While all this was happening, I was trying to potty train Liam, which was not easy. Around the time, Liam turned 4, he finally became dry during the daytime. He is still in nighttime diapers and that will not be changing in the near future. The problem is that Ben turned 2.5 about a month after Liam was finally consistently dry during the day. Then shortly after he turned 3, we moved from Alaska to Alabama.
Since arriving in Alabama, we have been trying to encourage Ben to use the potty and it has been a dismal failure. Initially he refused to sit on a potty for longer than 5 seconds as he won't sit still. Now he will sit, but he has NEVER once managed to produce anything in the potty. If I let him run around naked, he will pee on himself and deny he has done so with urine running down his leg. He can poop while doing gymnastics. When I change his diaper, he asks me if he has peed or pooped. He seems to have no awareness.
His OT recently left for another job and he has a new OT, and Wednesday she mentioned that Ben has poor body awareness which is why he drools so much and why he is still in diapers. I knew body awareness was "part" of SPD but I had forgotten about it. I had confused it with motor planning (which Ben excels at but Liam struggles with) and with vestibular sense (which is why both boys crash). Body awareness is actually called interoception and what I discovered about caused all sorts of light bulb moments.
This website about interoception had this to say: "If a person is under-responsive to interoception, they may not feel or respond to these sensations appropriately, quickly enough, or at all. They may rarely feel themselves breathing or their hearts beating. They may not feel hungry or thirsty often, so they may not perform these everyday tasks as often as others because they do not sense the need to. They will often be slow potty trainers and may end up developing enuresis because they do not feel the need to eliminate bowel waste or urine before the body begins to perform the task anyway. They may not breathe or sweat when their bodies should because they do not feel the need to."
Light bulb!
Ben happily skips meals and has never been interested in eating. He didn't nurse often. I always attributed it to reflux and even SPD and oral defensiveness, but what if he didn't get hunger cues? That makes a lot more sense, as it explains multiple issues for him.
Then there is this website on interoception. It affects digestion! Digestion! In another website it mentions that individuals with a poor sense of interoception often have digestive problems, such as constipation and/or diarrhea.
Light bulb!
That same websites and others show that much research has been done to connect interoception to mood, as that is the sense which regulates are sense of well being.
Light bulb!
Ben is my child who has always bounced between strong emotions--screaming one minute, giggling the next. This cycling of emotions has always worried me as I have a family history of bipolar disorder. It has also made him hard to evaluate as his compliance varies day to day and moment to moment.
I was going to wait until we moved to have Ben re-evaluated but am starting now. He has a first appointment with a psychologist on February 7th.
In the meantime, I am going to dig out our old brushes and start Wilabarger brushing protocol as I read somewhere that it helps interoception and brushing was quite successful with Liam. Here is a list of things I am going to look into for improving interoception: http://www.sensory-processing-disorder.com/interoceptive-sense.html I am also considering buying some musical sensors that go inside a pull up as it sounds like a good way to alert Ben by sound that he is peeing.
In fall 2010, I became worried about Ben and blogged about it: http://routhierfam.blogspot.com/2010/11/it-is-probably-nothing.html
Obviously, it wasn't nothing. Ben started Early Intervention and a year later was evaluated by a developmental pediatrician, who confirmed Ben has SPD and is at risk for a future diagnosis and recommended speech therapy, OT, ABA, and social skills groups. Without the autism diagnosis and without his delays being severe, we have been unable to secure much of the recommended treatment.
While all this was happening, I was trying to potty train Liam, which was not easy. Around the time, Liam turned 4, he finally became dry during the daytime. He is still in nighttime diapers and that will not be changing in the near future. The problem is that Ben turned 2.5 about a month after Liam was finally consistently dry during the day. Then shortly after he turned 3, we moved from Alaska to Alabama.
Since arriving in Alabama, we have been trying to encourage Ben to use the potty and it has been a dismal failure. Initially he refused to sit on a potty for longer than 5 seconds as he won't sit still. Now he will sit, but he has NEVER once managed to produce anything in the potty. If I let him run around naked, he will pee on himself and deny he has done so with urine running down his leg. He can poop while doing gymnastics. When I change his diaper, he asks me if he has peed or pooped. He seems to have no awareness.
His OT recently left for another job and he has a new OT, and Wednesday she mentioned that Ben has poor body awareness which is why he drools so much and why he is still in diapers. I knew body awareness was "part" of SPD but I had forgotten about it. I had confused it with motor planning (which Ben excels at but Liam struggles with) and with vestibular sense (which is why both boys crash). Body awareness is actually called interoception and what I discovered about caused all sorts of light bulb moments.
This website about interoception had this to say: "If a person is under-responsive to interoception, they may not feel or respond to these sensations appropriately, quickly enough, or at all. They may rarely feel themselves breathing or their hearts beating. They may not feel hungry or thirsty often, so they may not perform these everyday tasks as often as others because they do not sense the need to. They will often be slow potty trainers and may end up developing enuresis because they do not feel the need to eliminate bowel waste or urine before the body begins to perform the task anyway. They may not breathe or sweat when their bodies should because they do not feel the need to."
Light bulb!
Ben happily skips meals and has never been interested in eating. He didn't nurse often. I always attributed it to reflux and even SPD and oral defensiveness, but what if he didn't get hunger cues? That makes a lot more sense, as it explains multiple issues for him.
Then there is this website on interoception. It affects digestion! Digestion! In another website it mentions that individuals with a poor sense of interoception often have digestive problems, such as constipation and/or diarrhea.
Light bulb!
That same websites and others show that much research has been done to connect interoception to mood, as that is the sense which regulates are sense of well being.
Light bulb!
Ben is my child who has always bounced between strong emotions--screaming one minute, giggling the next. This cycling of emotions has always worried me as I have a family history of bipolar disorder. It has also made him hard to evaluate as his compliance varies day to day and moment to moment.
I was going to wait until we moved to have Ben re-evaluated but am starting now. He has a first appointment with a psychologist on February 7th.
In the meantime, I am going to dig out our old brushes and start Wilabarger brushing protocol as I read somewhere that it helps interoception and brushing was quite successful with Liam. Here is a list of things I am going to look into for improving interoception: http://www.sensory-processing-disorder.com/interoceptive-sense.html I am also considering buying some musical sensors that go inside a pull up as it sounds like a good way to alert Ben by sound that he is peeing.
Wednesday, July 4, 2012
A first for our family and Ben's language development
Ben has graduated from physical therapy. This might sound like a small thing or even an expected thing. For most kids, they start a therapy, catch up, and then no longer need the therapy. That has not been our experience, however. Both boys started Early Intervention, only to transfer to the school district at age 3 (unlike many friends whose children caught up through early intervention). Liam has done OT and ST for yeaars and while he no longer keeps falling behind, he still needs those services.
Ben started PT for toe walking and with a limited range of motion in his ankles which made walking with flat feet difficult. Early Intervention had worked on this with him since November 2010, and the toes walking was getting worse, not better. Ben's PT set a goal of him having a 10-15 degree rangle of motion in both ankles, and his range of motion is 19 degrees in one and 21 degrees in the other!!!!!!!
I was worried that Ben would ended up with casts to prevent the toe walking, but we just avoided that. As a HUGE aside, I am down one appointment to run the boys too.
See Ben's hands there? That is the startle reflex babies have to swinging or unexpected motion. Ben STILL does this.
Language wise, Ben is doing amazing. Three HUGE leaps happened in the last couple weeks. First, Ben has added pronouns, and has started to say "I do [blank]" rather than "Ben jump" or some other simple phrase spoken in the 3rd person. Second, Ben has started speaking in sentences FINALLY. Previously, he spoke mostly in 2 to 3 word phrases but we are starting to hear sentences. He doesn't have much fluency and I find him very hard to understand, but the sentences give me more context. Third, he can answer questions. Liam still has trouble with questions. Ben might not need speech therapy when we arrive in Alabama.
OT wise, Ben still has needs. He can now remove socks and a jacket, but cannot remove any other clothing. He still cannot put any clothing on. Sensory wise, he tends to be quite defensive and struggles with sensory integration a lot.
Ben started PT for toe walking and with a limited range of motion in his ankles which made walking with flat feet difficult. Early Intervention had worked on this with him since November 2010, and the toes walking was getting worse, not better. Ben's PT set a goal of him having a 10-15 degree rangle of motion in both ankles, and his range of motion is 19 degrees in one and 21 degrees in the other!!!!!!!
I was worried that Ben would ended up with casts to prevent the toe walking, but we just avoided that. As a HUGE aside, I am down one appointment to run the boys too.
Language wise, Ben is doing amazing. Three HUGE leaps happened in the last couple weeks. First, Ben has added pronouns, and has started to say "I do [blank]" rather than "Ben jump" or some other simple phrase spoken in the 3rd person. Second, Ben has started speaking in sentences FINALLY. Previously, he spoke mostly in 2 to 3 word phrases but we are starting to hear sentences. He doesn't have much fluency and I find him very hard to understand, but the sentences give me more context. Third, he can answer questions. Liam still has trouble with questions. Ben might not need speech therapy when we arrive in Alabama.
OT wise, Ben still has needs. He can now remove socks and a jacket, but cannot remove any other clothing. He still cannot put any clothing on. Sensory wise, he tends to be quite defensive and struggles with sensory integration a lot.
Tuesday, June 5, 2012
Conversation with Ben
This video shows Ben's articulation, his receptive language, his distraction, and his pragmatic language.
How normal is his language for a 38 month old? His school district evaluation showed 20% delay, but I wonder if it is more. I know he is talking more than Liam at this age and answering questions better, but his articulation and grammar seem delayed to me.
How normal is his language for a 38 month old? His school district evaluation showed 20% delay, but I wonder if it is more. I know he is talking more than Liam at this age and answering questions better, but his articulation and grammar seem delayed to me.
Friday, March 30, 2012
Elgibility results and special education, the 2nd time
Today was my meeting to find out the results of Ben's school eligibility testing...you know, the one he was so charming and cooperative for.
The overall report showed that Ben is 25% delayed in social skills and 20% delayed in speech/articulation and expressive language. The recommonded services are that he attends 1 hour of speech at his local elementary school (where he'll see the same SLP that does speech with Liam's SPED class) and that he has a CARE (Community-based Assistance and Resources in Early intervention) team that works with him. If he were old enough to attend preschool, the CARE team would work with his community based preschool and would provide 2 hours of special education within that setting. As he is too young for preschool, he will attend a play group headed by a SPED teacher twice a week.
For comparison to Liam's eligibility scores and services, see this post from September 2010.
The eligibility testing was quite thorough. A testing of his articulation showed he was 72% intelligiable to an SLP, which is considered moderately delayed as he should be almost completely understandable to an untrained person. The two articulation areas she is most concerned about are: final consonent deletion and cluster reduction/omission. He makes other articulation errors, but some are normative for his age (the example given is "wai" for light).
The testing on expressive vocabulary showed him a standard score of 79, or a delay of 20%. They also did an interpretation of his expressive language and wrote down everything he said. By 2 years 11 months, most children are apeaking in 4 word sentences. The average length of Ben's sentences is 2.9 words and 85% of those 2-3 words phrasescontained either grammatical errors or had unitelligble words.
Anchorage is considering Ben's speech to be moderately delayed.
They tested his fine and gross motor skills. They noted his issues with sensory integration but said it was being treated through private therapy. I need to research this, but I think they aren't supposed to consider what we do privately. Using a test of fine motor skills, they found his pre-writing skills to be a strength. I am not sure what to think of this. By Ben's age, Liam could draw a circle and stick figures and not long after turning three, he could write his name.....and Liam has a known fine motor delay. Ben cannot do those things yet. I think I need to keep my eye on this.
They tested his pre-academic school readiness and he scored in the average name, though they oted that they could not give him credit for the things he can do that are above age level.
In the area of Behavior/Social Skills/Emotional skills, Ben scored as 25% delayed in the areas of social interaction and independence. In order to address this, he will attend a twice a week play group (drop off play group) with a special education teacher at an elementary school here in town.
There is more to write about this, but I am in the middle of a crazy day which has involved, Liam's bus stuck in snow, being locked down on base, and fighting to get an updated ID card...in addition to IEP writing, etc.
I need 2 bottles of wine tonight....bottles, not glasses in this case.
The overall report showed that Ben is 25% delayed in social skills and 20% delayed in speech/articulation and expressive language. The recommonded services are that he attends 1 hour of speech at his local elementary school (where he'll see the same SLP that does speech with Liam's SPED class) and that he has a CARE (Community-based Assistance and Resources in Early intervention) team that works with him. If he were old enough to attend preschool, the CARE team would work with his community based preschool and would provide 2 hours of special education within that setting. As he is too young for preschool, he will attend a play group headed by a SPED teacher twice a week.
For comparison to Liam's eligibility scores and services, see this post from September 2010.
The eligibility testing was quite thorough. A testing of his articulation showed he was 72% intelligiable to an SLP, which is considered moderately delayed as he should be almost completely understandable to an untrained person. The two articulation areas she is most concerned about are: final consonent deletion and cluster reduction/omission. He makes other articulation errors, but some are normative for his age (the example given is "wai" for light).
The testing on expressive vocabulary showed him a standard score of 79, or a delay of 20%. They also did an interpretation of his expressive language and wrote down everything he said. By 2 years 11 months, most children are apeaking in 4 word sentences. The average length of Ben's sentences is 2.9 words and 85% of those 2-3 words phrasescontained either grammatical errors or had unitelligble words.
Anchorage is considering Ben's speech to be moderately delayed.
They tested his fine and gross motor skills. They noted his issues with sensory integration but said it was being treated through private therapy. I need to research this, but I think they aren't supposed to consider what we do privately. Using a test of fine motor skills, they found his pre-writing skills to be a strength. I am not sure what to think of this. By Ben's age, Liam could draw a circle and stick figures and not long after turning three, he could write his name.....and Liam has a known fine motor delay. Ben cannot do those things yet. I think I need to keep my eye on this.
They tested his pre-academic school readiness and he scored in the average name, though they oted that they could not give him credit for the things he can do that are above age level.
In the area of Behavior/Social Skills/Emotional skills, Ben scored as 25% delayed in the areas of social interaction and independence. In order to address this, he will attend a twice a week play group (drop off play group) with a special education teacher at an elementary school here in town.
There is more to write about this, but I am in the middle of a crazy day which has involved, Liam's bus stuck in snow, being locked down on base, and fighting to get an updated ID card...in addition to IEP writing, etc.
I need 2 bottles of wine tonight....bottles, not glasses in this case.
Monday, January 30, 2012
Mr. anti-establishment
Ben refuses to be categorized. Maybe it is the long hair, but he has been doing it his whole life. As a baby, there was debate about whether he had colic or reflux....Then reflux or GERD....then GERD or failure to thrive. No one has ever been able to put their finger on Ben.
At the moment, the only thing everyone agrees on is that he has Sensory Processing Disorder, but that is old news.
After his developmental pediatrician evaluation, he got 3 diagnoses....The developlmental ped says he has Early Childhood Developmental Delays, which encompassed the two other diagnoses: Sensory Processing Disorder from the OR and Mixed Expressive-Receptive Language Disorder from the speech therapist.
In following the recommendations, we have started OT and speech. Two weeks ago, Ben's private speech therapist discharged him from private speech saying that his delays are not severe enough to require private speech. That same week the teacher of his social skills group asked me if Ben had ANY words as she never heard him talk. Those are vastly different opinions, aren't they? When Liam turned 3, we were actually told the same thing....he had caught up and didn't require private speech anymore....Now at 4.5, he has more speech goals than ever and no one is arguing that he is not delayed or that he communicates as well as his peers.
I am not sure what I should do next. Ben is scheduled to be evaluated by the district in March to determine whether he'll require school services. I wonder which Ben they will get on evaluation day? The happy, energetic, attempting to socialize Ben or the fearful, clingy, screaming, shutting down Ben?
Monday, October 17, 2011
Ben's developmental ped evaluation
The appointment was suprising for me and completely unexpected. Beforehand, I said that I wouldn't be suprised if Ben was found to be on the autism spectrum and I wouldn't be surprised to find we wasn't. The appointment had different results than I expected.....Ben was given a diagnosis of Early Childhood Developmental Delay. The doctor explained that he doesn't believe Ben is on the autism spectrum and feels that his social skills are emerging.....BUT he sees 4 future results for Ben....option 1 is best case: we hit him with loads of early intervention and he outgrows his delays, option 2 is what the doctor suspects in most likely: Ben has a language delay (something along the lines of auditory processing disorder) which is interfering with his other areas of development, option 3: Ben will be diagnosed down the road with ADHD, and option 4: Ben will eventually be diagnosed on the autism spectrum if his emerging skills don't actually emerge.
The treatment plan the doctor laid out for us is private OT and speech on top of the early intervention. He believes Ben would benefit from the special education preschool that Liam attends. He wants Ben to receive ABA, but there is a catch....because Ben is not on the autism spectrum, Tricare will only cover 3 hours a week and it MUST be provided by a BCBA. Liam's BCBA cannot provide those hours herself at this time. We are still waiting for Tricare to make the referrals and Ben's PCM has not YET called us back, so at the moment, I am pushing ABA to the back burner. Liam's BCBA feels Ben is on the spectrum and thinks we should get a second opinion. I am struggling with feeling overwhelmed with all of this. I never expected the doctor to find that Ben has 50% delays in multiple areas. I don't exactly remember the numbers but will write a seperate post when his written report arrives.
There was good news.....The biggest is that the doctor absolutely thinks Ben should have allergy testing. He was generally supportive of a theory of allergies and GI distress affecting development. I noticed his library contained the book on special diets for special kids. :-) The other news is that he told me that I should have a handicap parking tag. He thinks this is for the saftey and well-being of other drivers, and not just to make my life easier. I got it yesterday and haven't needed to use it yet, but that will likely change when the parking lots get snow covered. Liam wasn't able to walk without falling last year. This year that would mean carrying 70+ pounds of boys wearing winter gear through parking lots on either hip. I am not sure I can physically manage that. The last bit of good news is Ben's growth....36 inches tall and 28.5 pounds!!!!!!!!!
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