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 Sensory Processing Disorder. Show all posts
Showing posts with label Sensory Processing Disorder. Show all posts
Thursday, October 10, 2013
Tuesday, February 12, 2013
Houston, we have pee!
Well, I have implemented my battle against Ben's poor interoception/ lack of body awareness. We implemented brushing therapy on Friday. Today during our normal no diaper time, Ben told me "I pee witte (little) bit" so I rushed him into the bathroom and gave him his option of peeing stances. He has been practicing for years so he stood, grabbed his penis, and with PERFECT aim peed into the potty.
Just like it was no big thing.
But it is HUGE.
Trying to remember this is the first step of many but tonight I'll celebrate.
Just like it was no big thing.
But it is HUGE.
Trying to remember this is the first step of many but tonight I'll celebrate.
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.
Thursday, May 17, 2012
Ben's "graduation" and IEP progress report/ OT re-evaluation
On Tuesday, Ben had his last day of both speech and of his special education play group. Ben's teacher had a little graduation ceremony and nothing is cuter than a just turned 3 year old wearing a construction paper graduation cap.
Ben's IEP quarterly progress report shows he MET every single social goal. I was floored. I am used to Liam's progress inching along with regressions. Socially, Ben is just exploding. We also had our last day of his Early Intervention social skills group today, and one of the more aggressive children was in Ben's personal space. Ben kept cowering and hiding behind me. After class he told me, "my necklace" (the little girl had grabbed his necklace) followed by "Ben sad." He can even identify emotions. Things like this just seem unbelievable to me. It helps me let go of my worries about Ben, and let's me know that the kind of developmental delays he faces are much easier addressed than Liam.
On his IEP progress report, he still has alot of work to do on his speech goals. His articulation still needs alot of work, and his senetence length is not what you'd expect of a 3 year old. He can answer questions (almost better than Liam) except for "why" questions, he was at 0% for those. Overall, since he started school based speech therapy, he has made amazing progress. I worry about him having a break in therapy this summer, and I know he'll need private speech therapy as soon as we arrive in Montgomery.
Ben had his OT re-evaluation a couple weeks ago. His private OT noted that his muscle tone and strength were low average. He was given the Peabody Developmental Motor Scales, and his "greasping" score is that of a 20 month old (tested at 37 months). Out of curiosity, I looked at Liam's OT evaluation done at nearly the same age (Liam was 38 months and Ben was 37 months....both were evaluated at the same therapy center here in Alaska, but by different OTs). Liam's fine motor quaotient was tested as in normal limits at that point. Interesting, since he is quite delayed now. In any case, Ben's "grasping" score was low but it was evened out by his high score in visual motor integration. In self-care skills, Ben tests as delayed. He cannot remove a single item of clothing, not even socks or shoes. This is a huge OT concern at the moment, as he needs to learn how to undress before he can learn how to dress.
As always with OT stuff, the sensory profile is where Ben really showed his OT needs. His auditory system showed a definite difference and his OT noted "Ben has difficulty functioning in a crowded, noisy room often requiring to be touched before he will respond to his name or follow a direction." Ben shows a definite difference in vesitibular processing and his OT notes that while he recently has begun to explore the swings, he "frequently demonstrates fear and takes a rigid posture when his feet leave the ground."
Overall, I am finding myself awed by the progress Ben has made. I worry about him less and less. It has helped as I forsee him losing his IEP after the move, but I think he will do fine with a good preschool setting and private OT and speech.
Ben's IEP quarterly progress report shows he MET every single social goal. I was floored. I am used to Liam's progress inching along with regressions. Socially, Ben is just exploding. We also had our last day of his Early Intervention social skills group today, and one of the more aggressive children was in Ben's personal space. Ben kept cowering and hiding behind me. After class he told me, "my necklace" (the little girl had grabbed his necklace) followed by "Ben sad." He can even identify emotions. Things like this just seem unbelievable to me. It helps me let go of my worries about Ben, and let's me know that the kind of developmental delays he faces are much easier addressed than Liam.
On his IEP progress report, he still has alot of work to do on his speech goals. His articulation still needs alot of work, and his senetence length is not what you'd expect of a 3 year old. He can answer questions (almost better than Liam) except for "why" questions, he was at 0% for those. Overall, since he started school based speech therapy, he has made amazing progress. I worry about him having a break in therapy this summer, and I know he'll need private speech therapy as soon as we arrive in Montgomery.
Ben had his OT re-evaluation a couple weeks ago. His private OT noted that his muscle tone and strength were low average. He was given the Peabody Developmental Motor Scales, and his "greasping" score is that of a 20 month old (tested at 37 months). Out of curiosity, I looked at Liam's OT evaluation done at nearly the same age (Liam was 38 months and Ben was 37 months....both were evaluated at the same therapy center here in Alaska, but by different OTs). Liam's fine motor quaotient was tested as in normal limits at that point. Interesting, since he is quite delayed now. In any case, Ben's "grasping" score was low but it was evened out by his high score in visual motor integration. In self-care skills, Ben tests as delayed. He cannot remove a single item of clothing, not even socks or shoes. This is a huge OT concern at the moment, as he needs to learn how to undress before he can learn how to dress.
As always with OT stuff, the sensory profile is where Ben really showed his OT needs. His auditory system showed a definite difference and his OT noted "Ben has difficulty functioning in a crowded, noisy room often requiring to be touched before he will respond to his name or follow a direction." Ben shows a definite difference in vesitibular processing and his OT notes that while he recently has begun to explore the swings, he "frequently demonstrates fear and takes a rigid posture when his feet leave the ground."
Overall, I am finding myself awed by the progress Ben has made. I worry about him less and less. It has helped as I forsee him losing his IEP after the move, but I think he will do fine with a good preschool setting and private OT and speech.
Monday, May 7, 2012
Leaps and Bounds
Exciting things are happening in Ben's world. He started school based speech therapy a little over a month ago. The progress he has made in that month is astounding. I have become gun shy of using the term "language explosion" as I have seen regression/stalled progress following big gains, but it seems to fit.
Ben is speaking in sentences finally! In addition to that, he asks questions!!!!!! Something I hear everyday while we drive, usually on the way home from wherever we were. "Where going, Mommy?" "Ben, we are going back home." "Cause, why, Mommy?" Oh, and mama is a word seldom heard, and the way he says Mommy is so cute. In situations where he is comfortable, he'll talk a bit, but he still refuses to talk in many social situations. His fluency is slow; he sounds like someone learning a foreign language. He talks slowly, halts alot, and makes many grammatical errors. But he is finally trying!
His articulation is improving, and he is so cooperative about practicing his speech homework. He has been exclusively working on s-blends. His first instinct is to drop the s, and his SLP has several cues for him to use it. He cannot manage sp or sl, even with the cues, but he tries. We work on word pairs, and initially he couldn't hear the difference between words off by only one letter, but now he totally gets it.
He is toe walking so much less! His physical therapist said that the progress he makes from week to week is what she usually sees over a month or several months. I am feeling confident that after we move this summer, we will be done with PT for good.
He had no problems adjusting to the little class he attends. He waves bye-bye to me, and seems to have fun. He has made his first ever friend with a little girl from the social skills class we have been in since September. The little girl is shy and reserved and the two of them seem to understand each other. Ben still isn't interested in socializing with most children. Liam has always wanted to be part of the group but misses alot of social cues and is awkward in his interactions. Ben, by contrast, seems to look at most kids with a sense of disgust and disinterest. He likes people he interacts with reguarly, but much prefers adults to kids his age.
He has finally gotten over his dislike of Dave and happily goes to him. It is more than that....when he hears the garage door open, he stops whatever he is doing and runs into the garage to get hugs from Dave. Liam is happy to see Dave but often doesn't notice him until he has been home for awhile as he is too engrossed in what he is doing.
Ben seems to be making cognitive leaps. He gets days of the week now and remembers the order things happen in with our crazy schedule. He has finally figured out the pattern of counting and can count higher than 20. Because of this, he spends alot of time counting. Liam was like that for a very long time, and numbers have begun to signal, happy boys for me, so I sometimes don't take notice of the counting.
The only area with no progress is eating. Ben still refuses most foods that need to be chewed, except for a limited number of safe foods. He has recently added cheeseburger as a safe food, so that is something. He will NOT touch food at all and would rather eat nothing that touch food with his hands.
His OT did a re-evaluation on him this week and said that he lacked many simple skills she'd expect in an 18 month old, but then had other skills that you don't expect to see until age 4. We have had this problem with Liam, so it isn't new, but it means we have another child that testing is not completely accurate for, and who refuses to fit in the mold.
Friday, April 27, 2012
Neuropsychological report: lots of numbers & his teacher's perspective on it
I got Liam's report yesterday, and am still emotionally processing everything, so this post is basically just a summary of what the report says. I will do a separate post on my reactions when I figure out how exactly I feel about it.
Liam was given two measures of intelligence: Weschler Preschool and Primary Scale of Intelligence (WPPSI-III) and Kaufman Brief Intelligence Test. To understand the scores of his WPPSI results, see this page: http://www.hoagiesgifted.org/highly_profoundly.htm
The highest he could have gotten on either subtest was a 155 and the highest overall he could have gotten was a 160.
Verbal IQ 129
Performance IQ 150
Full Scale IQ 144
His verbal IQ would have been quite a bit higher, but his score on one subtest was lower than the other area. The highest a scaled score can be on any subtest is 19. All of his performance subscales were 18.
His results on the Kaufman were also 144, which places him in the 99.8% on both IQ tests. His non-verbal score on the Kaufman was a 160.
To test academic functioning, Liam was given the Woodcock Johnson Test of Achievment, 3rd edition. Like IQ tests, the average score is 100. His scores varied between a 123 and 188, with most of his scores being in the 140 range. Grade equivalents were given and Liam's academic functioning is that of a child near the end of 1st grade. His basic reading skills were 154 (higher than the 99.9%) and his math reasoning was a 145 (at the 99.9% level). His lowest scoring area was spelling with a 123 and his highest was writing samples with a 188.
His motor skills were assessed with the Beery VMI and his motor coordination was in the 5th percentile. His score was a 76, which is just about the cut off for receiving OT services, but compared to his knowledge, this is a huge weakness for him.
His speech was tested with the following measures: Expressive Vocabulary Test (EVT-II), Peabody Picture Vocabulary Test (PPVT-IV), and NEPSY Developmental Neuropsychological Assessment--Second Edition. All language testing showed him to score above average.
Summary and Impressions: "Liam's overall intellectual abilities are clearly in the highly gifted range and his nonverbal reasoning skills are in the very superior range, falling a full four standard deviations above average performance." That is a direct quote from the report, and I will note here that scores only have to be 2 standard deviations above average to qualify as gifted and Liam's nonverbal reasoning is 4 standard deviations above. She notes that while his intelligence is a strength, it places him at increased risk for social maladjustment. His language scores ranged from average to superior, showing some pockets of weakness. His scores of social perception were average which is "well below expectations given his general intellectual abilities." That is again a direct quote. During the parent conference, she talked about Liam not being on the autism spectrum, but I am guessing she kept the diagnosis given this.
She talks about his only overt weakness was on paper and pencil tasks of graphomotor precision, and this was despite the fact that he has been doing OT since 24 months of age. She notes that findings show a "relative weakness" in language related to pragmatic language and conversation, as well as social functioning. "Overall, Liam continues to show patterns of difficulty involving pragmatic language, mildly restricted interest levels, sensrimotor concerns, and difficulty with social integration characteristic of individuals with pervasive developmental disorder."
The diagnoses she gave are:
Axis I:
299.80 Pervasive Developmental Disorder, Not Otherwise Specified
311.00 Anxiety Disorder Not Otherwise Specified
315.4 Developmental Motor Coordination Disorder
Recomendations: She recommends continued "intensive occupational and speech therapy interventions." She talks about increased fine motor demands in kindergarden and says that it is extremely important that OT not be interrupted and be provided in both the school setting as well as in private therapy. She cites Liam's problems with pragmatic language as the likely reason for his social delays. She notes that his extreme intelligence is a risk for additional social difficulties. She recommends ongoing speech therapy and social skills groups to address these needs. She notes that "Liam does show indications of significant underlying anxiety." She says the move this summer will likely make his anxiety worse and recommends formal counseling to address this. She ends by saying that it is extremely important that Liam is in an educational setting that addresses his very superior intellectual and academic skills, and recommends placement in a self-contained program for the highly gifted.
____________________________________
Below is the reponse from Liam's special education teacher about the report, as well as her suggestions for modifications to his IEP. She has known Liam for 2 years and is such an asset and a wonderful advocate for Liam. She is one of the many reasons I will be sad to leave Alaska.
"Wow...I just finished reading Liam's report and did not find any real surprises. His intelligence is really up there isn't it :-) I've always known that but it's good to have it on paper for your move :-) With the interspersed delays and high intelligence it's easy to see why there are emotional/anxiety issues. He's going to be (and probably already has been) a difficult boy to raise. But you two have done everything right! The trick will be to keep that going in Alabama :-) I was glad to see that my scores were mostly in agreement with yours (although I don't get to see the real meltdowns and adaptive delays). It's good to know how well he's able to hold it together here (although then you get the brunt of it!)
Thanks for sharing the report with me. I'm glad to know that we've always been on the same page! If there is anything else I can do for you all before you move, please let me know. I'm thinking of giving him support in kindergarten throughout the entire day, at least to start. Then the hours may be able to be reduced (once he gets used to the new, full-day setting). What do you think? If we don't give him 32.5 hours of special education, we could still give him some plus make sure before/after school, recess, and lunch are covered for awhile. And I will be putting in that he'll need a quiet place to go when needed and possibly an individual work station for times needed. What do you think?"
Liam was given two measures of intelligence: Weschler Preschool and Primary Scale of Intelligence (WPPSI-III) and Kaufman Brief Intelligence Test. To understand the scores of his WPPSI results, see this page: http://www.hoagiesgifted.org/highly_profoundly.htm
The highest he could have gotten on either subtest was a 155 and the highest overall he could have gotten was a 160.
Verbal IQ 129
Performance IQ 150
Full Scale IQ 144
His verbal IQ would have been quite a bit higher, but his score on one subtest was lower than the other area. The highest a scaled score can be on any subtest is 19. All of his performance subscales were 18.
His results on the Kaufman were also 144, which places him in the 99.8% on both IQ tests. His non-verbal score on the Kaufman was a 160.
To test academic functioning, Liam was given the Woodcock Johnson Test of Achievment, 3rd edition. Like IQ tests, the average score is 100. His scores varied between a 123 and 188, with most of his scores being in the 140 range. Grade equivalents were given and Liam's academic functioning is that of a child near the end of 1st grade. His basic reading skills were 154 (higher than the 99.9%) and his math reasoning was a 145 (at the 99.9% level). His lowest scoring area was spelling with a 123 and his highest was writing samples with a 188.
His motor skills were assessed with the Beery VMI and his motor coordination was in the 5th percentile. His score was a 76, which is just about the cut off for receiving OT services, but compared to his knowledge, this is a huge weakness for him.
His speech was tested with the following measures: Expressive Vocabulary Test (EVT-II), Peabody Picture Vocabulary Test (PPVT-IV), and NEPSY Developmental Neuropsychological Assessment--Second Edition. All language testing showed him to score above average.
Summary and Impressions: "Liam's overall intellectual abilities are clearly in the highly gifted range and his nonverbal reasoning skills are in the very superior range, falling a full four standard deviations above average performance." That is a direct quote from the report, and I will note here that scores only have to be 2 standard deviations above average to qualify as gifted and Liam's nonverbal reasoning is 4 standard deviations above. She notes that while his intelligence is a strength, it places him at increased risk for social maladjustment. His language scores ranged from average to superior, showing some pockets of weakness. His scores of social perception were average which is "well below expectations given his general intellectual abilities." That is again a direct quote. During the parent conference, she talked about Liam not being on the autism spectrum, but I am guessing she kept the diagnosis given this.
She talks about his only overt weakness was on paper and pencil tasks of graphomotor precision, and this was despite the fact that he has been doing OT since 24 months of age. She notes that findings show a "relative weakness" in language related to pragmatic language and conversation, as well as social functioning. "Overall, Liam continues to show patterns of difficulty involving pragmatic language, mildly restricted interest levels, sensrimotor concerns, and difficulty with social integration characteristic of individuals with pervasive developmental disorder."
The diagnoses she gave are:
Axis I:
299.80 Pervasive Developmental Disorder, Not Otherwise Specified
311.00 Anxiety Disorder Not Otherwise Specified
315.4 Developmental Motor Coordination Disorder
Recomendations: She recommends continued "intensive occupational and speech therapy interventions." She talks about increased fine motor demands in kindergarden and says that it is extremely important that OT not be interrupted and be provided in both the school setting as well as in private therapy. She cites Liam's problems with pragmatic language as the likely reason for his social delays. She notes that his extreme intelligence is a risk for additional social difficulties. She recommends ongoing speech therapy and social skills groups to address these needs. She notes that "Liam does show indications of significant underlying anxiety." She says the move this summer will likely make his anxiety worse and recommends formal counseling to address this. She ends by saying that it is extremely important that Liam is in an educational setting that addresses his very superior intellectual and academic skills, and recommends placement in a self-contained program for the highly gifted.
____________________________________
Below is the reponse from Liam's special education teacher about the report, as well as her suggestions for modifications to his IEP. She has known Liam for 2 years and is such an asset and a wonderful advocate for Liam. She is one of the many reasons I will be sad to leave Alaska.
"Wow...I just finished reading Liam's report and did not find any real surprises. His intelligence is really up there isn't it :-) I've always known that but it's good to have it on paper for your move :-) With the interspersed delays and high intelligence it's easy to see why there are emotional/anxiety issues. He's going to be (and probably already has been) a difficult boy to raise. But you two have done everything right! The trick will be to keep that going in Alabama :-) I was glad to see that my scores were mostly in agreement with yours (although I don't get to see the real meltdowns and adaptive delays). It's good to know how well he's able to hold it together here (although then you get the brunt of it!)
Thanks for sharing the report with me. I'm glad to know that we've always been on the same page! If there is anything else I can do for you all before you move, please let me know. I'm thinking of giving him support in kindergarten throughout the entire day, at least to start. Then the hours may be able to be reduced (once he gets used to the new, full-day setting). What do you think? If we don't give him 32.5 hours of special education, we could still give him some plus make sure before/after school, recess, and lunch are covered for awhile. And I will be putting in that he'll need a quiet place to go when needed and possibly an individual work station for times needed. What do you think?"
Tuesday, April 10, 2012
Updates about various appointments
We had 3 appointments on Monday; that is our slow day. :-/
First, Liam had his Monday morning ABA. I talked a bit with his therapist as I am feeling overwhelmed by his anxiety/OCD type behavior involving hoarding. He had gathered up all Ben's birthday gift bags, all the Easter baskets in the house, every empty plastic egg, all the toys the Easter bunny brought (including Ben's toys), an empty candy box, some of Ben's birthday presents and had ALL of this stuff into his closet. With his table full of Lego creations and his dresser cluttered with school art projects, it is impossible to walk through his room without bumping into some weird thing he has decided to hoard. Dave thought of a brillant idea for the plastic eggs; we mailed those back to the Easter Bunny. Now we have to work on getting the rest of the stuff out of his room.
Second, Dave came home to stay with Liam who had to skip preschool to go to the dentist with Dave. In order to get medical clearance to move (which we need dur to being in the exceptional family member program), Liam needs dental clearance. The Air Force is weird. So Dave took Liam to the dentist while I took Ben to his 3 year well baby visit.
Ben is HUGE! Well, for him anyway....no wonder my back has been hurting. As usual his head measured 95th percentile (52 cenimeters). He is 37 inches tall, which is 65th percentile and the first time he has been above average! He is 32 pounds, which is 60th percentile!!!!!!!!!!!!!!! To put it in perspective, both his height and his weight were below 20th percentile at his two year well baby. He has grown nearly 4 inches and gained 7 pounds in one year!!!!!!!!!!!!!!
Now, the not good stuff......He flipped out about the med tech taking his vital signs. The med tech got frustrated with Ben and kept saying how he'd never seen a kid be so difficult about his temperature being taken on his forehead. I wanted to yell at him that restraining my 3 year old is no picnic for me. Then we saw his pediatrician. You'll rarely hear me say this about military doctors, but I REALLY LIKE this guy. He is good and he is awesome about talking to the children and asking their permission before touching them. It did not much matter; Ben was okay with most of the exam, but flipped out about the doctor looking in his ears and checking in his diaper region. The pediatrician said he sees a lot of red flags for autism in Ben and on his developmental screening paperwork. Of course, this is not news to me, but Ben is so inconcsistent that I don't often hear it. He recommends we get a 2nd opinion from a different developmental pediatrician.
Third, Liam saw the dentist for dental clearance. Dave took him as the boys appointments were too close in time for me to do both. Liam had x-rays of his teeth and cooperated for a cleaning. Dave said he did amazing. He was excited to see his bones with the x-ray and sat still and followed all directions during the teeth cleaning.
Finally, we got word about a summer program that Liam's school SLP had suggested. The University of Alaska-Anchorage is offering a speech and language clinic with students studying to be SLPs. It is an hour twice a week. Liam was accepted to do it. It runs from the beginning of June until mid-July so it fits perfectly in our schedule regarding the move. I asked the program director if I could apply for Ben and she said the wait list is short. The application needs to be filled out by a SLP so I will have her do it when I take Ben to his school based speech therapy this morning. Cross your fingers that Ben gets a slot as I think it would be quite helpful for him.
That is it for our Monday updates......off today for one preschool, two speech therapy appointments, two OT appointments, and Ben's special ed play group.
First, Liam had his Monday morning ABA. I talked a bit with his therapist as I am feeling overwhelmed by his anxiety/OCD type behavior involving hoarding. He had gathered up all Ben's birthday gift bags, all the Easter baskets in the house, every empty plastic egg, all the toys the Easter bunny brought (including Ben's toys), an empty candy box, some of Ben's birthday presents and had ALL of this stuff into his closet. With his table full of Lego creations and his dresser cluttered with school art projects, it is impossible to walk through his room without bumping into some weird thing he has decided to hoard. Dave thought of a brillant idea for the plastic eggs; we mailed those back to the Easter Bunny. Now we have to work on getting the rest of the stuff out of his room.
Second, Dave came home to stay with Liam who had to skip preschool to go to the dentist with Dave. In order to get medical clearance to move (which we need dur to being in the exceptional family member program), Liam needs dental clearance. The Air Force is weird. So Dave took Liam to the dentist while I took Ben to his 3 year well baby visit.
Ben is HUGE! Well, for him anyway....no wonder my back has been hurting. As usual his head measured 95th percentile (52 cenimeters). He is 37 inches tall, which is 65th percentile and the first time he has been above average! He is 32 pounds, which is 60th percentile!!!!!!!!!!!!!!! To put it in perspective, both his height and his weight were below 20th percentile at his two year well baby. He has grown nearly 4 inches and gained 7 pounds in one year!!!!!!!!!!!!!!
Now, the not good stuff......He flipped out about the med tech taking his vital signs. The med tech got frustrated with Ben and kept saying how he'd never seen a kid be so difficult about his temperature being taken on his forehead. I wanted to yell at him that restraining my 3 year old is no picnic for me. Then we saw his pediatrician. You'll rarely hear me say this about military doctors, but I REALLY LIKE this guy. He is good and he is awesome about talking to the children and asking their permission before touching them. It did not much matter; Ben was okay with most of the exam, but flipped out about the doctor looking in his ears and checking in his diaper region. The pediatrician said he sees a lot of red flags for autism in Ben and on his developmental screening paperwork. Of course, this is not news to me, but Ben is so inconcsistent that I don't often hear it. He recommends we get a 2nd opinion from a different developmental pediatrician.
Third, Liam saw the dentist for dental clearance. Dave took him as the boys appointments were too close in time for me to do both. Liam had x-rays of his teeth and cooperated for a cleaning. Dave said he did amazing. He was excited to see his bones with the x-ray and sat still and followed all directions during the teeth cleaning.
Finally, we got word about a summer program that Liam's school SLP had suggested. The University of Alaska-Anchorage is offering a speech and language clinic with students studying to be SLPs. It is an hour twice a week. Liam was accepted to do it. It runs from the beginning of June until mid-July so it fits perfectly in our schedule regarding the move. I asked the program director if I could apply for Ben and she said the wait list is short. The application needs to be filled out by a SLP so I will have her do it when I take Ben to his school based speech therapy this morning. Cross your fingers that Ben gets a slot as I think it would be quite helpful for him.
That is it for our Monday updates......off today for one preschool, two speech therapy appointments, two OT appointments, and Ben's special ed play group.
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, November 14, 2011
Too much for one post
But I'll try to squeeze it in anyway. I am sure the monotony of the therapy posts will make my readers miss my sleep posts.
The good news in this house is that Liam will be having a formal OT evaluation at school and will have OT goals added to his IEP. This doesn't sound like a big deal, but it really is. Schools are notoriously reluctant to provide OT, and Liam hasn't qualified for OT at school since aging out of Early Intervention at age 3.
I have beenobsessing thinking about obessing about whether to send Liam to Kindergarten next year or whether to hold him back a year. There are pros and cons to either decision and I am frozen in terror that I will make the wrong decision. My anxiety is through the roof.
I got the full report from the developmental pediatrician. Ben was tested at 30 months. His receptive language and social skills are the level of a 16 month old. That is a 50% delay in two areas. His fine motor skills are that of a 20 month old (33% delayed) and his expressive language is about that same level. What blew me away is that he shows 4 symptoms of autism. 6 symptoms in 3 categories are needed for a diagnosis of autism, but Liam was diagnosed with PDD-NOS with 4 symptoms.....and now Ben has 4 symptoms. There is more to the report, but I cannot stop fixating on the severity of his delays and the number of symptoms of autism.
There is stuff related to moving. The military ships one car. How will the other move 5000 miles? Our tenants will be staying until summer 2014, so we need a house to rent. Therapy to set up for the boys, two IEPs to transfer over, wait lists, and figuring out school.
We are hosting Thanksgiving next week, and will have people Dave works with at our house. I haven't even started to prepare.
Ben has a cold and has thick yellow snot pouring from his nose. I am at the start of a cold.
I cannot stop myself from feeling anxious and paniced no matter which issue I try to focus on first, and I am having a hard time priortizing.
The good news in this house is that Liam will be having a formal OT evaluation at school and will have OT goals added to his IEP. This doesn't sound like a big deal, but it really is. Schools are notoriously reluctant to provide OT, and Liam hasn't qualified for OT at school since aging out of Early Intervention at age 3.
I have been
I got the full report from the developmental pediatrician. Ben was tested at 30 months. His receptive language and social skills are the level of a 16 month old. That is a 50% delay in two areas. His fine motor skills are that of a 20 month old (33% delayed) and his expressive language is about that same level. What blew me away is that he shows 4 symptoms of autism. 6 symptoms in 3 categories are needed for a diagnosis of autism, but Liam was diagnosed with PDD-NOS with 4 symptoms.....and now Ben has 4 symptoms. There is more to the report, but I cannot stop fixating on the severity of his delays and the number of symptoms of autism.
There is stuff related to moving. The military ships one car. How will the other move 5000 miles? Our tenants will be staying until summer 2014, so we need a house to rent. Therapy to set up for the boys, two IEPs to transfer over, wait lists, and figuring out school.
We are hosting Thanksgiving next week, and will have people Dave works with at our house. I haven't even started to prepare.
Ben has a cold and has thick yellow snot pouring from his nose. I am at the start of a cold.
I cannot stop myself from feeling anxious and paniced no matter which issue I try to focus on first, and I am having a hard time priortizing.
Sunday, October 30, 2011
Ben's OT evaluation and a video showing receptive speech
I got the written OT report in the mail this week, and it was interesting to see on paper how similar Ben's OT needs are to Liam's. The OT listed the following as areas of concern:
-decreased fine motor skills
-decreased visual motor skills
-decreased bilateral coordination
-decreased self-help skills
-decreased social interaction/play skills
difficulties with sesnory processing and modulation, particularly in the following areas: auditory processing, oral processing, tactile processing, imapired self-regulation to modulate attention, behavior, and emotional responses as sesnory stimulation changes.
She recommends OT 1-2 times a week.
I finally downloaded photos off my camera. With my fancy new iPhone, I am less motivated to download from the Nikon on a regular basis. The video is a bit long, but shows Ben's issues with receptive language. In the beginning, he is looking at animals and I am trying to ask him to name the animal or sound and he really struggles with managing it. Then I start giving him a visual prompt by handing him the animal, and he does MUCH better. This shows how much he relies on visual prompts. Then we end by counting because that is what he loves to do.
Wednesday, October 19, 2011
Liam's OT re-evaluation, a Liam brag, and general update
I got the results of Liam's private OT re-evaluation. He has been doing private OT for nearly 2 years now, but had a re-evaluation as he has been with his current therapist for a year. I always find the testing interesting, and it certainly shed some light on why we are struggling to get Liam to qualify for OT in the schools. The testing showed that his visual motor integration skills are above average, but his grasping skills are average. I personally find this surprising as Liam still cannot use the correct grasp for holding a pencil/crayon. His fine motor skills testing were similar as a toddler, he did not use a pincer grasp but tested above average as he compensated for it. I still worry that lack of pincer grasp and inability to properly hold a pencil will be to his detriment down the road as he is expected to build on those skills.
The evaluation showed that Liam is on the low end of normal in self-care skills. He made huge progress in this area this summer, so that shows how much therapy is paying off.
The evaluation noted that he has low muscle tone and recommends physical therapy to address this need.
The sensory profile showed where Liam's greatest OT needs are. It noted whether a sensory processing area showed "typical performance," "probably differerence," or "definite difference." Liam did not have a single area of sensory processing that is in the normal range. He shows a probable difference in sensory processing in areas of: visual processing, multisensory processing, activity level modulation, modulation of visual input affecting emotional response & activity level, and emotional/social responses. Liam shows a "defnite difference" in sensory processing in the areas of: auditory processing, vestibular processing, touch processing, oral sensory processing, sensory processing related to endurance/tone, modulation related to body position and movement, modulation of sensory input affecting emotional responses, and behavioral outcomes of sensory processing.
He has made significant progress through OT and will continue to do so, but he clearly needs the focus on sensory integration.
Now, for the cool Liam story or one of the ways that autism is cool.....
Liam has an amazing memory. Liam also loves numbers and patterns. This weekend he was counting in a specific pattern. He started at 90 and counted up to 99. I thought maybe he didn't know the number "100" yet so I told him "100" after 99, and he responded "No!" and then said 80. Starting at 80, he coounted to 89, and then counted 70 to 79. So he was counting forwards by ones and backwards by 10s. Earlier this week, I discovered he knows how to count to 15 in Spanish. I have no clue where he learned this, so I told Dave. Dave thought it was cool and counted to 10 in German ONCE. Since that one time, Liam can now count to 10 in German. He has recently started making up songs to include numbers in all three languages.
The general update is that based on Ben's forthcoming developmental evaluation, the base clinic has processed referrals for private speech, OT, and PT (physical therapy). Based on Liam's OT re-evaluation, he will have a PT referral coming. That means FOUR more weekly appointments. During the Monday-Friday time, Liam has the following schedule: 8 hours of special education preschool (should be 10 but I pull him out one day for private therapy), 2.5-3 hours of time on the bus for transport to special ed preschool, 8.5 hours of church preschool, an hour of transport to and fron preschool, 3 hours of ABA, 1.5 hours of private speech and OT, 1.5 hours of transport between those appointments, and 1 hour of karate. That makes for 28-29 hours of school, therapy, and driving. That doesn't count the 3 hours weekly that Ben does for Early Intervention (total is now up to 31-32 hours a week). In addition to that, I have time to feed both boys breakfast and lunch, and transporting them (getting outewear on/off, etc). We will soon be adding 4 more hours, and who knows how many 45 minute driving triups between our house and the therapy center....when all is said and done in a 40 hour work week, me and the boys do 40+ hours of work/driving. :-(
No wonder I am often craving more coffee.
Tuesday, September 20, 2011
Here we go again, feeling like I am back in 2009
thankfully minus the deployment and newborn who screamed non-stop....
Ben started the process of his evaluation through the neurodevelopmental clinic here. He'll have 4 different evaluations in all by 4 different specialists then on October 10th, the developmental pediatrician will review the total results with us.
Today was Ben's OT evaluation as part of this process. I *know* Ben has Sensory Processing Disorder. I wrote about it in this post. That was in December 2010 when Early Intervention started services with Ben for Sensory Processing Disorder. I wrote about it again in May when Early Intervention upgraded the status of Ben's services and encouraged me to take him to a Licensed Master's in Social Work (LMSW) for Floortime to address his extreme tantrums as they were beyond the expertise of Early Intervention. The LMSW confirmed Ben is a sensory seeker and we have been working on tactics.
Therefore, today should have been no surprise, but it was for some reason. I think because I view Ben has higher functioning than Liam, so I never expect Ben to qualify for services. Then when Ben does qualify, I am reminded of where Liam started with his delays. In addition, the amount of therapy sessions is exhausting for me, and I have been pushing through, just wanting to get Liam intensive therapy until he starts elementary school, and now I feel I am back at the starting point with Ben and am looking at 19 months PAST Liam starting school of intensive therapy with Ben.
It is a bit much.
So, the OT said Ben has Sensory Processing Disorder, specifically sensopry modulation disorder which is the most common type. As part of this, he has some mild fine motor delays. Tl treat this, she recommends to continue Early Intervention. Ben has moderate trouble with sensory integration and emotional modulation. She said the best way to address this is private OT, like Liam attends. So we'll be adding another weekly appointment, though I know there is quite a wait list. The logisitics of scheduling it will be quite challenging to say the least. Finally, she was QUITE concerned about Ben's extreme toe walking and immediately recommended a PT evaluation. So, in the course of a week, I find out BOTH boys need PT evaluations.
Tomorrow Ben sees another specialist for testing. I imagine developmental testing. In two weeks, he has his speech evaluation. Finally on October 10th, he sees the developmental pediatrician and later that day, he'll meet with me and Dave to review his findings.
I have earned my wine tonight I think. It is only Tuesday and Liam has done 5 hours of school, 5 hours of ABA, 45 minutes of speech, 45 minutes of ABA, a 30 minute session with the school OT, and an hour of Tumbling. Ben has had an hourt of Floortime and an hour OT evaluation. I have driven 6 hours over the course of 2 days, done 3 loads of laundry, and cooked a roast chicken. There has been no naps and a wake up at night. There has been too much stress and not enough fun.
Tuesday, August 16, 2011
Odds of autism in siblings and other anxiety evoking thoughts
A recent study was released yesterday showing that odds of autism for children with a diagnosed sibling are significantly higher than once thought. I blogged about the odds here and felt a bit twitchy about Ben having 1 in 20 odds of a diagnosis. This new study shows that 19% of children with a sibling on the spectrum will also receive a diagnosis. When talking about boys, that percentage is even higher....25%....a 1 in 4 chance. I heard about this earlier in the day while dealing with a puking Liam, so I kind of shoved it to the back of my brain. Then last night Dave comes home having heard this study on NPR and Dave is shaken and tells me how anxious it makes him. Dave is a rock; little worries him. In our relationship, I am the one who does all the worrying, and if he is worried, then there is a good reason. Honestly, those odds scare me so much that I sti;ll don't have the ability to think about it too much.
I STILL haven't heard from the developmental pediatrician...the only one in Alaska that Ben was referred to months ago. Several weeks ago, Ben's OT through Early Intervention said he contacted her to ask her opinion, which was that Ben needs an evaluation from a specialist. I have talked to Liam's BCBA about Ben and she said he reminds her alot of her oldest son who was diagnosed with Asperger's at the age of 7. In my heart, in my gut, I still think he doesn't meet the criteria for being on the spectrum and just has sensory issues at play, but I am not exactly an uninvolved party. When I am honest, I know that Ben ignores most people and chooses only to engage with me and Liam.
Liam starts special education preschool next week. I wouldn't be anxious except none of his classmates will be the same, and despite my explaining this to him, he doesn't understand it. In addition, his teacher is having surgery so he'll be starting the year with a substitute. The school's SLP retired and there will be a new one; the SLP who retired was excellent and I am having a hard time imagine anyone as good replacing her. We were supposed to go to the school yesterday to meet his teacher and tour the classroom, but he was puking, so we couldn't.
Next week I meet with the church preschool that Liam will start in September. I have massive anxiety about this. Will he get kicked out for potty accidents? Will other kids pick up on his differences and ostracize him or make fun of him? How will he deal with a larger classroom with more kids? How will Ben and I manage being always on the go?
I STILL haven't heard from the developmental pediatrician...the only one in Alaska that Ben was referred to months ago. Several weeks ago, Ben's OT through Early Intervention said he contacted her to ask her opinion, which was that Ben needs an evaluation from a specialist. I have talked to Liam's BCBA about Ben and she said he reminds her alot of her oldest son who was diagnosed with Asperger's at the age of 7. In my heart, in my gut, I still think he doesn't meet the criteria for being on the spectrum and just has sensory issues at play, but I am not exactly an uninvolved party. When I am honest, I know that Ben ignores most people and chooses only to engage with me and Liam.
Liam starts special education preschool next week. I wouldn't be anxious except none of his classmates will be the same, and despite my explaining this to him, he doesn't understand it. In addition, his teacher is having surgery so he'll be starting the year with a substitute. The school's SLP retired and there will be a new one; the SLP who retired was excellent and I am having a hard time imagine anyone as good replacing her. We were supposed to go to the school yesterday to meet his teacher and tour the classroom, but he was puking, so we couldn't.
Next week I meet with the church preschool that Liam will start in September. I have massive anxiety about this. Will he get kicked out for potty accidents? Will other kids pick up on his differences and ostracize him or make fun of him? How will he deal with a larger classroom with more kids? How will Ben and I manage being always on the go?
Tuesday, June 28, 2011
Terrible Twos
Ben is well into his terrible twos these days.
For now, I'll leave Ben's hair long as it suits his rock star personality. I have a feeling parenting will be a wild ride with him.
This is bad timing as Liam is in a defiant streak at the moment; in addition, I never dealt with the terrible twos....Liam didn't have them due to his delays.
I often say Ben is like a rock star: loud, moody, a bit bipolar, and quite demanding.
The whole rock star thing is my argument for keeping his hair long, but Ben's hair length is a bit of a family argument at the moment. Dave tells me everytime Ben is called a girl, but Liam was called a girl more often and he had short hair, so Dave's ploy isn't working. That and since Liam was born, I have grown thick skin to the comments of others.
I get asked alot whether it is Ben's nap time, sometimes at bizarre times of day like 9:30am or 5pm. The truth is that he doesn't have random crying spells anymore but he is just a cranky kid. Ben can be very happy and is quite entertaining when in a good mood. He makes me laugh all the time. But his moods turn on a dime, and he goes straight into a screaming, kicking demon. We are often asked to leave places due to the disruptions he can cause.For now, I'll leave Ben's hair long as it suits his rock star personality. I have a feeling parenting will be a wild ride with him.
Leaps forward....mostly good but with a dose of defiance
I figured I'd share more photos taken by S. Jordan Photography as part of an update on Liam.
At one point, most of Liam's porfessional photos looked like this:
But in the last year, he has learned to look at the camera and smile and show off his beautiful eyes.
Equally exciting is Liam's language as he has made huge leaps. He is answering questions on a more regular basis, asking questions, and even sustaining one or two back and forth bits on one topic. After waiting nearly 4 years, I can have short conversations with my sensitive guy. For the most part, I love hearing how his mind works and it gives me alot of hints to what sensory input he is needing at the moment or when he is building up to a meltdown. The ability to communicate has made parenting Liam fun and rewarding.
With typical language comes typical behavior of 3 year olds that talk. With Liam's language and social delays, we had no terrible twos....or at least nothing like what I saw my friend's experience. Liam's newfound ability to communicate means a new found ability to talk back, question mom's authority, and just be downright contrary. Liam has always been spirited and willful and has alot of issues related to wanting to be in control. This has made for some tense times at our house.
I have found that this level of language requires a whole different set of parenting skills. I am behind the ball as parents usually have a year or so while their children go through speaking phrases, simple sentences, answering simple questions, and finally sustaining conversation. Liam did all of this much faster and my parenting hasn't yet caught up to his skill level. Liam likes to contradict choices I give him and tell me "No Mommy those are NOT my choices. Stop saying those choices!" while crying and then adding "My choices are to eat an ice pop (at 8pm) or watch Diego."
Liam is also exhibiting lots of silly and boy-ish behavior.....non-stop potty words through dinner time, yelling inappropriate things, talking about people's butts, giggling at farts. I am really feeling out-numbered these days.
Liam still has delays and all this progress has brought with it a rash of sensory seeking behavior. These days he is putting everything in his mouth. People always worry about small items near Ben, but he never puts things in his mouth, but yesterday I had to pull out a Thomas the train size barrel from his mouth. I have given him things to chew on and he keeps getting ice to chew on all day.....but it isn't enough. He has started clicking his teeth for hours a day, chewing on his fingers, and generally behaving like a 6 month old in the middle of teething. He has also been seeking out lots of crashing behavior but thankfully it has been nice out so we spend lots of time outdoors.
Socially, he is doing better, and seeks out kids to play with often. His interactions are off quite a bit still, and it interferes a bit with kids wanting to play with him. He doesn't make eye contact and generally is looking at the ground while talking and has a tendency to either shout or whisper. He wants freedom at playgrounds so he spends quite a bit of time out of earshot from me so I don't always know how he is being treated but I always note when kids walk away or exclude him by body language. Yesterday though, he met a 5 year old girl and they played together for about an hour. It gave me hope that he will be just fine socially.
At one point, most of Liam's porfessional photos looked like this:
During my last update on Liam, he was in the middle of a huge regression and I am happy to say that it is over.
One of the most exciting things for me is that he is about 90% potty trained. He is having accidents about once or twice a week instead of several times a day. He can pee standing up and is requiring less assistance in the potty. He is not at all night trained and still soaks a big boy pull-up (Good Nites) and even pees through to his bed most nights. It is really common for kids on the spectrum to not be night trained until they are teen-agers and I am definitely thinking it will be years before Liam is ready for that step. Thankfully, it is not disruptive to social interactions at this point in time. Even more exciting is that I haven't had to buy pull-ups (except for the Good Nites) for months and am spending less and less time helping Liam potty. I am pretty sure that he will have no problems managing at the chuch preschool in the Fall.
Equally exciting is Liam's language as he has made huge leaps. He is answering questions on a more regular basis, asking questions, and even sustaining one or two back and forth bits on one topic. After waiting nearly 4 years, I can have short conversations with my sensitive guy. For the most part, I love hearing how his mind works and it gives me alot of hints to what sensory input he is needing at the moment or when he is building up to a meltdown. The ability to communicate has made parenting Liam fun and rewarding.
With typical language comes typical behavior of 3 year olds that talk. With Liam's language and social delays, we had no terrible twos....or at least nothing like what I saw my friend's experience. Liam's newfound ability to communicate means a new found ability to talk back, question mom's authority, and just be downright contrary. Liam has always been spirited and willful and has alot of issues related to wanting to be in control. This has made for some tense times at our house.
I have found that this level of language requires a whole different set of parenting skills. I am behind the ball as parents usually have a year or so while their children go through speaking phrases, simple sentences, answering simple questions, and finally sustaining conversation. Liam did all of this much faster and my parenting hasn't yet caught up to his skill level. Liam likes to contradict choices I give him and tell me "No Mommy those are NOT my choices. Stop saying those choices!" while crying and then adding "My choices are to eat an ice pop (at 8pm) or watch Diego."
Liam is also exhibiting lots of silly and boy-ish behavior.....non-stop potty words through dinner time, yelling inappropriate things, talking about people's butts, giggling at farts. I am really feeling out-numbered these days.
Liam still has delays and all this progress has brought with it a rash of sensory seeking behavior. These days he is putting everything in his mouth. People always worry about small items near Ben, but he never puts things in his mouth, but yesterday I had to pull out a Thomas the train size barrel from his mouth. I have given him things to chew on and he keeps getting ice to chew on all day.....but it isn't enough. He has started clicking his teeth for hours a day, chewing on his fingers, and generally behaving like a 6 month old in the middle of teething. He has also been seeking out lots of crashing behavior but thankfully it has been nice out so we spend lots of time outdoors.
Socially, he is doing better, and seeks out kids to play with often. His interactions are off quite a bit still, and it interferes a bit with kids wanting to play with him. He doesn't make eye contact and generally is looking at the ground while talking and has a tendency to either shout or whisper. He wants freedom at playgrounds so he spends quite a bit of time out of earshot from me so I don't always know how he is being treated but I always note when kids walk away or exclude him by body language. Yesterday though, he met a 5 year old girl and they played together for about an hour. It gave me hope that he will be just fine socially.
Tuesday, May 31, 2011
Mini-break
I have loved the term mini-break ever since I read "Bridget Jones" and I love traveling, but particularly like traveling in bite size portions. I have taken a handful of 7 day or longer vacations/trips, and I always find that I am ready to go home by day 5. What I excel best at is going somewhere for 3 or 4 days and sight-seeing at break neck speed. Just ask anyone who traveled in Europe with me. I came prepared with an itinerary and even in big cities, we'd hit major things to see in just a few days.
Then my boys came along and my mini-breaks screeched to a halt. We visited family in Christmas 2008, but that was a long trip and painful for all involved. We took 2 week long trips to Florida. The first was when Dave was there for training before he deployed and we didn't have any time to see much. The second time was after the deployment when we stayed at a dear friend's parents' house. Ben didn't like the beach or the heat and we struggled to find something to do that didn't cause him to scream.
One of the main reasons my boys don't travel well is special needs. Liam is on the autism spectrum and changes in routine cause him stress. Both boys have Sensory Processing Disorder which means they have trouble interpreting sensory information. I cannot control their environment while traveling, so this causes more issues for them.
We took a trip to Seward this weekend (pictures coming) and it was mostly successful but the issues they have with traveling were highlighted.
Liam became obsessed with the idea of "the little house" and began to repeat questions about it. When are we going to the little house? Will there be other kids there? Will my toys be there? It made for a long drive to Seward. Once we arrived, he wanted to be at the little house, and he didn't want to leave. He was so excited about going there, he thought that was the whole idea of the trip.
Lesson learned: Liam has anxiety over schedule changes and I really need to start implementing a picture schedule. Almost all kids on the spectrum need one and hopefully it would help eliminate some of his obsessions.
Our first sight-seeing stop was a Dog Sled Tour. When we got to the "sled" the dogs went crazy. They LIVE for pulling sleds and were barking like crazy to be picked to be hooked to the sled. The barking was too much for our dog lover Ben and he went into full meltdown mode. Then the dogs started pulling the sled and his meltdown got worse. He finally started calming down, by the time the ride was almost over. Then we got to see puppies, which went well for the most part, except I had to protect the puppy from being squeezed to death by Ben as he seeks out tight squeezes. Finally, there was an informational portion about running the Iditorod, except I didn't hear any of it because Ben was literally running circles around the property after recovering from the meltdown.
Lesson learned: Ben is sensitive to auditory stimulation and to vestibular input he doesn't control (the dog sled and swinging) but he seeks out tactile input (puppy fur). He also seeks out hard squeezes and requires non-stop running. I really wanted to do a wildlife cruise, but Ben on a boat for 4 hours or longer would have been a nightmare.
The day we left, I wanted to check out a coffeehouse in an old church that doubled as an art gallery. We planned to eat breakfast there. As soon as we walked in, Liam started saying "It smells too much in here." He became agitated and wouldn't sit down, repeating about the smell. We decided to leave as he was starting to cry and pace. I asked Dave if he thought the coffee smell was overwhelming Liam, and Dave said he smelled an old musty smell like old books, and maybe Liam picked up on that.
Lesson learned: Sometimes it just isn't worth the battle.
All in all, it was a good trip. I don't know if we would have experienced more problems if we stayed longer or if there would have been less problems. In any case, I hope that things start getting easier down the road. I am not sure how to work travelling around Ben's need for constant movement. I am wishing Liam could learn to read sooner rather than later so I can write a schedule instead of drawing pictures. I miss travelling and am determined to find a way to accommodate my boys' needs with my desire to see new places.
Then my boys came along and my mini-breaks screeched to a halt. We visited family in Christmas 2008, but that was a long trip and painful for all involved. We took 2 week long trips to Florida. The first was when Dave was there for training before he deployed and we didn't have any time to see much. The second time was after the deployment when we stayed at a dear friend's parents' house. Ben didn't like the beach or the heat and we struggled to find something to do that didn't cause him to scream.
One of the main reasons my boys don't travel well is special needs. Liam is on the autism spectrum and changes in routine cause him stress. Both boys have Sensory Processing Disorder which means they have trouble interpreting sensory information. I cannot control their environment while traveling, so this causes more issues for them.
We took a trip to Seward this weekend (pictures coming) and it was mostly successful but the issues they have with traveling were highlighted.
Liam became obsessed with the idea of "the little house" and began to repeat questions about it. When are we going to the little house? Will there be other kids there? Will my toys be there? It made for a long drive to Seward. Once we arrived, he wanted to be at the little house, and he didn't want to leave. He was so excited about going there, he thought that was the whole idea of the trip.
Lesson learned: Liam has anxiety over schedule changes and I really need to start implementing a picture schedule. Almost all kids on the spectrum need one and hopefully it would help eliminate some of his obsessions.
Our first sight-seeing stop was a Dog Sled Tour. When we got to the "sled" the dogs went crazy. They LIVE for pulling sleds and were barking like crazy to be picked to be hooked to the sled. The barking was too much for our dog lover Ben and he went into full meltdown mode. Then the dogs started pulling the sled and his meltdown got worse. He finally started calming down, by the time the ride was almost over. Then we got to see puppies, which went well for the most part, except I had to protect the puppy from being squeezed to death by Ben as he seeks out tight squeezes. Finally, there was an informational portion about running the Iditorod, except I didn't hear any of it because Ben was literally running circles around the property after recovering from the meltdown.
Lesson learned: Ben is sensitive to auditory stimulation and to vestibular input he doesn't control (the dog sled and swinging) but he seeks out tactile input (puppy fur). He also seeks out hard squeezes and requires non-stop running. I really wanted to do a wildlife cruise, but Ben on a boat for 4 hours or longer would have been a nightmare.
The day we left, I wanted to check out a coffeehouse in an old church that doubled as an art gallery. We planned to eat breakfast there. As soon as we walked in, Liam started saying "It smells too much in here." He became agitated and wouldn't sit down, repeating about the smell. We decided to leave as he was starting to cry and pace. I asked Dave if he thought the coffee smell was overwhelming Liam, and Dave said he smelled an old musty smell like old books, and maybe Liam picked up on that.
Lesson learned: Sometimes it just isn't worth the battle.
All in all, it was a good trip. I don't know if we would have experienced more problems if we stayed longer or if there would have been less problems. In any case, I hope that things start getting easier down the road. I am not sure how to work travelling around Ben's need for constant movement. I am wishing Liam could learn to read sooner rather than later so I can write a schedule instead of drawing pictures. I miss travelling and am determined to find a way to accommodate my boys' needs with my desire to see new places.
Monday, May 23, 2011
Impossible to photograph
After our Christmas photo experience, I think Dave might be done with trying to capture our tasmanian devil little angel, Ben, on film. So when a local photographer offered mini-sessions while Dave would be out of town, I figured it would be a great time to get updated photos of the boys wearing their adorable age t-shirts without torturing my normally patient husband. I thought that with Ben being a bit older, he might be easier to photograph....I was wrong. He either happily played with his back to the camera, rotating his body as the photographer moved the camera to his front or cried and threw himself on the ground kicking and screaming.
Sam of S.Jordan Photography did a great job and was patient with Ben trying to take down her backdrop or running all over her yard while she chased him with her camera. You can check out more of her work on her Facebook business page. She posted sneak peeks from our photo shoot yesterday.
My beautiful blue eyed boy:
Liam was as cooperative as he could be. The sun was very bright and he had a hard time managing as he doesn't like bright light. He didn't even want to play outside yesterday due to it being so bright. I got a pair of his Kid Banz sunglasses and he can manage better if he keeps his sunglasses on.
The only time Ben cooperated was when he could hold the mushroom which he insisted was a "tata" (i.e. cupcake). He refused to sit on it, but would eat it for us.
Sam of S.Jordan Photography did a great job and was patient with Ben trying to take down her backdrop or running all over her yard while she chased him with her camera. You can check out more of her work on her Facebook business page. She posted sneak peeks from our photo shoot yesterday.
My beautiful blue eyed boy:
My goodness, I have some pale kids!
Friday, May 20, 2011
Last Day of School
Yesterday was the last day of school. This meant several things....a small party, saying good-bye to friends moving to Kinergarten, panic from Mommy about how to keep busy over the summer, getting a CD of pictures from the teacher, and Liam's progress report on his IEP.
This was my favorite photo of Liam from the year:
First goal is answering 2 "wh" questions about his school day. At his last progress report, he could do this without any visual prompts 20% of the time. With visual prompts, he could answer both questions 40% of the time. This quarter showed slow progress. He could answer both questions without a visual prompt 37.5% of the time and with a visual prompt 37.5% of the time.
Liam learned deep breathing and counting to 10 as strategies for dealing with stress. Progress report shows that before learning these strategies, Liam was able to control his responses 40% of the time, and after learning the deep breathing and counting, he can control his response 55% of the time. He does need verbal prompts to use the stress relieving techniques.
I love the above photo as it shows the giant slide in the classroom that all the kids love.
So, the progress report didn't do much for my anxiety levels, but summer plans are slowly falling into place. Unfortunately, most things doen't start until June, so for the next week I am solo parenting with few structured activities or options for such.
This was my favorite photo of Liam from the year:
To show how much he changed, here he was the first day of school:
Now, let's talk about the IEP stuff....I'll put in photos for a visual break from all the depressing IEP stuff. For comparison, this is the March progress report .
First goal is answering 2 "wh" questions about his school day. At his last progress report, he could do this without any visual prompts 20% of the time. With visual prompts, he could answer both questions 40% of the time. This quarter showed slow progress. He could answer both questions without a visual prompt 37.5% of the time and with a visual prompt 37.5% of the time.
The second goal was Liam will manage his behavior in effective ways. In role play activities, Liam will learn, practice, and use strategies for dealing with stress in 3 out of 4 trials. Baseline is that stress causes Liam to become tearful and once upset can no longer communicate. His biggest problems are dealing with change.
Liam learned deep breathing and counting to 10 as strategies for dealing with stress. Progress report shows that before learning these strategies, Liam was able to control his responses 40% of the time, and after learning the deep breathing and counting, he can control his response 55% of the time. He does need verbal prompts to use the stress relieving techniques.
The third goal is that Liam would be able to potty independently. Last quarter he kept his pull-up dry 87% of the time. This quarter he was in underwear and remained dry 61% of the time. That isn't a typo the numbers are moving in the wrong direction. Quoting the teacher, "He has started to become very angry when he is asked to use the restroom. He will sometimes hit the toilet paper dispenser or other objects in the bathroom."
The fourth goal is Liam will put on outerwear with help with fasteners only in 4 out 5 opportunities presented. The progress report says "Liam's largest obstacle to being able to dress independently is his distractibility. He is so busy watching the other children that he forgets what he is supposed to be doing. While getting dressed away from the other children, Liam can concentrate better and he is able to get on his snow pants, boots, hate, and mittens by himself. He continues to need help with his coat and backpack."
The fifth goal is that Liam will communicate with adult and peers using a variety of modalities. Liam will appropriately initiate communication with peers to initiate play, share materials, take turns without adult prompting in 3 out of 4 opportunities. The progress report states that there are numerous whole-group lessons using a social story book addressing initiating play and joining play, and then Liam's class practice the skills in structured and less structured activities. To quote "Liam willingly and delightfully participates, but continues to need adult prompts to initiate the play, appropriately. He will state who is going to play with rather than ask if he can play. He does not spontaneously intiate sharing materials (0%) in an unstructured activity without adult prompt but is very willing to do so with one. He will share when asked by a peer to do so, as well. He shares turns without prompting."
(Mommy and Ben are in this photo too...This was looking for the gingerbread baby during the Christmas party).
The sixth goal was that Liam will increase expressive vocabulary skills. When given a social situation, Liam will identify and name an appropriate matching emotion with 90% accuracy in 3 out of the 4 opportunities. The progress report shows this is mastered. With 100% accuracy, Liam can name happy, sad, mad/angry, surprised, and afraid with 100% accuracy on both real faces and pictures. In addition when described a social situation, Liam can identify how someone would feel with 100% accuracy.
The seventh goal is Liam will maintain a conversation with adults and peers. In unstructured settings, Liam will maintain verbal turn taking with adults by using voice and or gesture, by staying on topic, extending the conversation with a minimum of 1 comment or question, and waiting appropriately for communication turn. In the 3rd quarter, Liam maintained verbal turn-taking in 33% of the opportunities. The progress report states that Liam maintained verbal turn-taking in 40% of opportunities. The report notes, "He is inconcsistent, which seems to be dependent on his emotional or physical set of the day. Some days he is very connected, interactive, and responsive, others, he seems to be somewhere else."
So, the progress report didn't do much for my anxiety levels, but summer plans are slowly falling into place. Unfortunately, most things doen't start until June, so for the next week I am solo parenting with few structured activities or options for such.
Monday, May 16, 2011
What is crashing behavior?
I usethis term alot and I am aware that other might not know what it means. I am tempted to post this video to Facebook, but honestly scared of judgement. I am not allowing my boys to run wild here, and honestly watching them do this for up to THREE hours a day makes me crazy.
This is a game the two of them created. I stucture play time to include things that provide deep pressure (things like Tumbling class, lots of jumping etc) so they won't feel the need to crash, but no matter how many opportunities they have for deep pressure, it never seems to be enough.
If they are not engaged in this game, Liam tends to engage in his preferred crashing, which is running as hard as he can into wooden items like doors or walls. He also like pushing himself along the floor on his head or chest and then using his head to knock Ben over.
Ben's preferred crashing looks different. He likes jumping in the air, putting his legs out and landing on his butt in a butt flop or falling backwards on a bed without breaking a straight position.
The video ended when Liam engaged in kicking behavior for the 3rd time and earned a time out.
This is a game the two of them created. I stucture play time to include things that provide deep pressure (things like Tumbling class, lots of jumping etc) so they won't feel the need to crash, but no matter how many opportunities they have for deep pressure, it never seems to be enough.
If they are not engaged in this game, Liam tends to engage in his preferred crashing, which is running as hard as he can into wooden items like doors or walls. He also like pushing himself along the floor on his head or chest and then using his head to knock Ben over.
Ben's preferred crashing looks different. He likes jumping in the air, putting his legs out and landing on his butt in a butt flop or falling backwards on a bed without breaking a straight position.
The video ended when Liam engaged in kicking behavior for the 3rd time and earned a time out.
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