Tonight I had the pleasure of going to a workshop on "Creating Visual Strategies for Children with Autism and ADHD" that the Special Education Parent's Advisory Council (Which I am the Chairperson of) sponsored at a local school. It was run by this lady who has a son with Autism. Her son spoke a bit too. It was great hearing him. He is 13. The sister spoke a little bit too. She is an older teen.
The workshop was awesome! I really loved listening to the son tell about what life is like for him. The mother was very informative too. I hope to hear her again sometime. She brought up the quote "Quiet mouths have the loudest minds". She highly recommended
Carly Fleishman's Facebook Page Autism Sparkles and
and Single Mothers Who Have Children with Autism. I've never looked at Carly's facebook page, but look forward to reading more of her story. The mother also recommended reading "The Difficult Child" which is an old book, but a very informative one she said. She went into how many times children with Autism have medical issues going on. That could be anything from Celiac, vision issues, seizures, neurological issues, allergies and more. She said how too often people don't look deep enough into the causes of negative behaviors. She explained autism as having a computer keyboard that works but a printer that does not. The info can get in but not out. She explained how to a child with Autism, learning English (Or whatever language the family speaks) is actually like learning a second language. She explained the benefits of teaching children sign language. She also said that when a child with Autism is having a meltdown it's best to not speak. When children scream, try to whisper. She also recommended the book "My Many Colored Days" to teach children about feelings and making a "Feel Good" collage which can help them calm down. It's just things that make the child feel better. It could be food or anything they are interested in. She recommended "Tobin Learns to Make Friends" which is a book with a train theme. She talked about working to increase children's visual language through teaching feelings, using visual schedules (I used these for a very long time with Honeybunches... You can see more about ours here), power cards (Which she suggested putting on a ring with index cards that show the child's favorite superhero or objects with things such as "Thomas the train follows directions" that have positive messages), using social stories and behavioral programs. One thing I plan on using in the future is a "Goodbye Hello Book" to help with the transition from elementary school to middle school. She filled the book with happy memories, pictures of teachers with happy memories and other happy things to remember about the previous school. She also added in pictures of good things to look forward to at the new school. She talked about using stop signs on places like siblings room and other places you don't want the child with Autism going. That creates a visual stop. The Child With Special Needs is another book she highly recommended. She highly recommended this Super Flex curriculum and books. She ended by saying a few quotes:
"Children with Autism do not have missing pieces. Instead their brains are wired differently."
"Autism is not a processing error. It's a whole different operating system."
She also threw out a scary statistic: 80% of marriages in parents of children who have Autism end in divorce.
Thursday, May 23, 2013
Tuesday, May 21, 2013
IEP Meeting Update
We had Honeybunches end of year IEP progress meeting. It went pretty well. Here are the updates:
In Attendence:
In Attendence:
- Current SPED teacher Mrs Understanding, Next year's SPED teacher (Mr M who I have to find a good nickname for because the aide in that class is also a Mr M), School Psych, School Counselor, PT, Principal and SPED Director. (OT and Speech could not make it, but I signed a form saying I excused them since they gave the SPED Director a report which he shared.)
- Said he's doing very well.
- She talked with Honeybunches yesterday about the meeting. She explained Honeybunches' options of placements next year to him. He was totally against going to the 5-6th grade school. He told her "No not going" to that school.
- They talked about him possibly going to Mr M's class, which he liked that idea.
- They have been working on calming techniques.
- The counselor would love for him to increase peer interaction and increase the friendship piece of their goals.
- He is very reward driven.
- He has been very respectful and funny. They laugh a lot together.
- The long range goal she would like to work on would be getting back with peers in their sessions. Lately he always wants to work alone with her.
- He's made small but steady gains.
- He is very enjoyable.
- She is pleased with his progress.
- The SPED Director reported how OT said he's meeting all his goals so next year she is considering moving towards a consult instead of direct services.
- He has been having good peer relations in class. He interacts with peers appropriately. He is making slow and steady gains academically. Reading comprehension is something they are working hard with, that he needs to continue working on.
- Math is his weakness. They are working on arrays and multiplication. He wants to memorize the multiplication facts. He has trouble with multistep problems. They overwhelm him. She believes he struggles in Math because of his short term memory weakness.
- Language is coming along good. He's been working with his para on the Ipad. He can type 20 wpm either on the Ipad or on the computer.
- Since the med change back to Abilify he's been "Happy and his demeanor has changed".
- He is very reward driven
- Because of behavioral needs, she believes that Mr M's class would be the best place for him since he needs assistant staying on task and complying with classroom rules.
- She mentioned how having a 1:1 aide might be hindering his progress.
- Said she did not think that his current 1:1 aide was working out because Honeybunches has her figured out. I said "I strongly agree".
- Placement to be in Mr M's class for at least next year.
- Try without 1:1 aide (Class for next year at most will have 8 children with SPED teacher and 2 class aides, but right now there are only 2 children placed there to begin in August so to begin he'd still be getting 1:1 attention). They believe being without an aide would be a step towards him becoming more independent.
- We're going to try him on the regular bus without an aide. They had suggested the SPED Van, but I think he'd be more successful on the regular bus with a familiar driver (She's driven this route since Monica was in 2nd grade so for about 10 years so chances are she'll still be driving the route in the Fall). The team agreed to try the regular bus with an assigned seat.
- The SPED Director is getting Honeybunches his own IPad (Along with survivor case and applications) to use for Summer tutoring and for transition to new class to be programmed with applications specifically for him. His current SPED teacher will program it before this school year ends.
- He will get Summer tutoring with his current SPED teacher and the aide of Mr M's classroom (Who is the other Mr M that I need to rename for online purposes to decrease confusion lol). They are going to split the tutoring, which will be offered 2 hours per day, 4 days a week for 4 weeks in July. Most likely, there will be no Summer Enrichment Program this year due to budget cuts.
- Mr M's Classroom uses a level system, which I was given a copy of. The teacher said he'll get me copies of the incentives in a few weeks, because his home printer is broken. He believes it will work well for Honeybunches because each level has a good number of incentive choices. With Honeybunches things work for a while, then his interest changes. They chart it every 15 minutes. Children get checks for speaking appropriately, cooperating with adults, staying on task and respecting materials. Then they add goals to the bottom of the sheet that they are working on. Children in the class have things to do such as pledge, greeting and jobs. Here is the chart:
- We will meet the 2nd week in September for his annual review with the current SPED Director before the new one takes his position. (He is retiring the 3rd week in September.)
- IEP Ammendment to delete 1:1 aide in services; Stipulate "Will reinstate 1:1 aide for specific subject, or school time activity or bus if necessary". Also adding in "Will change bus to van w/o specific 1:1 monitor if bus without monitor does not work".
Wednesday, May 15, 2013
2nd opinion eval report
Last week I called the psychiatrist who did the 2nd opinion on Honeybunches meds, which the new pediatrician requested. I requested that they send the evaluation report to his current psychiatrist. Today at his appointment with her we finally got the results.
Some of the report goes back into his development from infancy and more. It is a pretty comprehensive 4 page evaluation summary. It begins with saying how Honeybunches "Is a very complicated boy and has an existing specialist for his psychiatric medication treatment". Next the doctor stated "As you know, these MCPAP consultations are not comprehensive psychiatric evaluations, therefore, I would like my recommendations to be seen as suggestions and ideas for further progress in his care rather than definitive recommendations". From there he went into his developmental history all the way back to infancy, which I provided him with as well as his psychiatric care history. He talked about his diagnoses (BP, ADHD, PDD-NOS, Receptive-Expressive Language Disorder and Anxiety Disorder). The doctor stated "I am not certain of the validity of all these diagnoses; however, mother describes his history to be very consistent with the autism spectrum disorder as well as having a very compelling overlay of significant mood disorder beyond the mood dysregulation which is ordinarily characteristic of autism spectrum disorders..." From there he went into his hospitalization and medication history. He then went into the family history noting that "His mother has been extremely well motivated to seek all the services that she needs to support ----'s development with his mental health and developmental disability."
Then finally he went onto his examination. He wrote "On examination I found --- to be a very pleasant and cooperative child. He had very apparent signs of autism spectrum disorder. His speech was monotone. He had repetitive verbal mannerisms. He had very poor eye contact. He did show a tendency to be somewhat perseverative. He did not engage in any age appropriate play activities, but was perfectly cooperative with talking. He had a tendency to be concrete in his responses. He had a positive mood throughout the interview. His affect was appropriate. He did not show anxiety. He did not have difficulty separating from his parents. He was not significantly restless or hyperactive. He was attentive to the interview and task at hand. He did not have any suicidal ideation. He did not have any signs or evidence of delusional thinking. He did not appear to respond to any internal stimuli. He was fully oriented. His memory was intact, actually very good for his age and for both immediate and long-term items. He had a reasonable degree of insight and showed normal judgement for his age. He had no tics. He did have some lip smacking movements, which appeared to be consistent with mild tardive dyskinesia. My overall impression of --- is that his history and examination is consistent with the diagnosis of autism spectrum disorder and I do think that there is a high likelihood that his diagnosis is complicated by the co-occuring presence of severe and significant mood disorder on the bipolar spectrum. Therefore, I am provisionally inclined to agree with both of these diagnoses of autism spectrum and bipolar disorder NOS. I do question the presence of a separate diagnosis of expressive-receptive language disorder as well as generalized anxiety disorder as well as ADHD, because I feel that these symptoms pertained to these additional diagnoses are attributed to his autism spectrum and mood disorder diagnoses."
He then goes into:
"I talked with ---'s parents about ideas about medications and I would be happy to discuss this further with his current psychiatric nurse. I shared with mother that the issue of the metabolic side effects of antipsychotic medications are the most important concerns in regard to medication adverse effects and the first priority should be to try to address this. I think it is very unlikely that the current trial of Seroquel is going to offer any advantages to the previous treatment of Abilify in regard to metabolic side effects. Regarding further directions in addressing the mood instability issues in the future, stage I would be to attempt a trial of discontinuation of Seroquel without adding any further mood stabilizing medications. It is possible that now that he is a little bit older, he no longer requires an antipsychotic medication to keep his mood under control. If he is able to tolerate being off the Seroquel and not on other antipsychotic medication, this would be optimal. If this is not possible, then stage II would be to consider trials of a secondary mood stabilizing medication other than an antipsychotic. Notably, he has not had any trials with Depakote, Tegratol or Topomax in the past and I believe that all three of these medications could be considered in addition to his current treatment with Lithium. If these medications do not work, then the third recommendation would be to very carefully and judiciously try conventional antipsychotic medications in very low doses. These would include potentially trials of haloperidol, Prolixin or Trilafon. These medications and doses could be more robust in their effectiveness and may not aggravate his tardive dyskinesia symptoms. They are much less likely to be associated with fatty liver or metabolic effects, then the atypical antipsychotics however of course his movement disorder will need to be closely monitored. After considering the relative advantages and disadvantages I would remark that I believe that the fatty liver is more serious of a concern than the risk of tardive dyskinesia, although admittedly tardive dyskinesia is also an extremely undesirable side effect. If none of these suggestions is helpful, then I would suggest considering further psychiatric consultation to explore other avenues for treatment." (Then he went into discussing some family history stuff regarding my stepson that I don't want to get into on here...) From there he said "Nonetheless, because of the strong family history of serious mood disorders on the mother's side of the family, I do think that it is reasonable to consider that bipolar spectrum disorder is an accurate secondary diagnosis in addition to his primary autism spectrum disorder."
When I emailed the regular psych nurse he sees after my appointment with this 2nd opinion doc telling her about his three step plan she immediately disagreed with it. I trust her judgement more because she knows Honeybunches much better. She did not agree that he would be okay without an antipsychotic. We did trial different ones in Dec-Feb which did not work out well at all, so he went back on Abilify but at a very low dose. She thought with his symptoms of Tardive Dyskinesia and Akathesia, that the old APs would be more likely to cause those symptoms. It did not sound like she approved of using them, which might be an agency decision. I agree that his ADHD, anxiety disorder and language disorder could go along with his Autism. I am glad that they clearly seen those the Autism and Bipolar, because those are what I have considered his main diagnoses for years now. I have always doubted the ADHD. I found it interesting that he seemed to think the autism was his primary diagnosis with mood disorder secondary from the way I understood what he wrote. The reason that was interesting to me, is because when he was three he got the Bipolar diagnosis, but did not get the Autism diagnosis until age six. I was happy to finally read this evaluation. IDK why the 2nd opinion's doc did not want to just give it to me. They were pretty insistent on only sharing it with doctors. That's why I am glad the current psych nurse is so awesome and gives me copies of everything lol.
Some of the report goes back into his development from infancy and more. It is a pretty comprehensive 4 page evaluation summary. It begins with saying how Honeybunches "Is a very complicated boy and has an existing specialist for his psychiatric medication treatment". Next the doctor stated "As you know, these MCPAP consultations are not comprehensive psychiatric evaluations, therefore, I would like my recommendations to be seen as suggestions and ideas for further progress in his care rather than definitive recommendations". From there he went into his developmental history all the way back to infancy, which I provided him with as well as his psychiatric care history. He talked about his diagnoses (BP, ADHD, PDD-NOS, Receptive-Expressive Language Disorder and Anxiety Disorder). The doctor stated "I am not certain of the validity of all these diagnoses; however, mother describes his history to be very consistent with the autism spectrum disorder as well as having a very compelling overlay of significant mood disorder beyond the mood dysregulation which is ordinarily characteristic of autism spectrum disorders..." From there he went into his hospitalization and medication history. He then went into the family history noting that "His mother has been extremely well motivated to seek all the services that she needs to support ----'s development with his mental health and developmental disability."
Then finally he went onto his examination. He wrote "On examination I found --- to be a very pleasant and cooperative child. He had very apparent signs of autism spectrum disorder. His speech was monotone. He had repetitive verbal mannerisms. He had very poor eye contact. He did show a tendency to be somewhat perseverative. He did not engage in any age appropriate play activities, but was perfectly cooperative with talking. He had a tendency to be concrete in his responses. He had a positive mood throughout the interview. His affect was appropriate. He did not show anxiety. He did not have difficulty separating from his parents. He was not significantly restless or hyperactive. He was attentive to the interview and task at hand. He did not have any suicidal ideation. He did not have any signs or evidence of delusional thinking. He did not appear to respond to any internal stimuli. He was fully oriented. His memory was intact, actually very good for his age and for both immediate and long-term items. He had a reasonable degree of insight and showed normal judgement for his age. He had no tics. He did have some lip smacking movements, which appeared to be consistent with mild tardive dyskinesia. My overall impression of --- is that his history and examination is consistent with the diagnosis of autism spectrum disorder and I do think that there is a high likelihood that his diagnosis is complicated by the co-occuring presence of severe and significant mood disorder on the bipolar spectrum. Therefore, I am provisionally inclined to agree with both of these diagnoses of autism spectrum and bipolar disorder NOS. I do question the presence of a separate diagnosis of expressive-receptive language disorder as well as generalized anxiety disorder as well as ADHD, because I feel that these symptoms pertained to these additional diagnoses are attributed to his autism spectrum and mood disorder diagnoses."
He then goes into:
"I talked with ---'s parents about ideas about medications and I would be happy to discuss this further with his current psychiatric nurse. I shared with mother that the issue of the metabolic side effects of antipsychotic medications are the most important concerns in regard to medication adverse effects and the first priority should be to try to address this. I think it is very unlikely that the current trial of Seroquel is going to offer any advantages to the previous treatment of Abilify in regard to metabolic side effects. Regarding further directions in addressing the mood instability issues in the future, stage I would be to attempt a trial of discontinuation of Seroquel without adding any further mood stabilizing medications. It is possible that now that he is a little bit older, he no longer requires an antipsychotic medication to keep his mood under control. If he is able to tolerate being off the Seroquel and not on other antipsychotic medication, this would be optimal. If this is not possible, then stage II would be to consider trials of a secondary mood stabilizing medication other than an antipsychotic. Notably, he has not had any trials with Depakote, Tegratol or Topomax in the past and I believe that all three of these medications could be considered in addition to his current treatment with Lithium. If these medications do not work, then the third recommendation would be to very carefully and judiciously try conventional antipsychotic medications in very low doses. These would include potentially trials of haloperidol, Prolixin or Trilafon. These medications and doses could be more robust in their effectiveness and may not aggravate his tardive dyskinesia symptoms. They are much less likely to be associated with fatty liver or metabolic effects, then the atypical antipsychotics however of course his movement disorder will need to be closely monitored. After considering the relative advantages and disadvantages I would remark that I believe that the fatty liver is more serious of a concern than the risk of tardive dyskinesia, although admittedly tardive dyskinesia is also an extremely undesirable side effect. If none of these suggestions is helpful, then I would suggest considering further psychiatric consultation to explore other avenues for treatment." (Then he went into discussing some family history stuff regarding my stepson that I don't want to get into on here...) From there he said "Nonetheless, because of the strong family history of serious mood disorders on the mother's side of the family, I do think that it is reasonable to consider that bipolar spectrum disorder is an accurate secondary diagnosis in addition to his primary autism spectrum disorder."
When I emailed the regular psych nurse he sees after my appointment with this 2nd opinion doc telling her about his three step plan she immediately disagreed with it. I trust her judgement more because she knows Honeybunches much better. She did not agree that he would be okay without an antipsychotic. We did trial different ones in Dec-Feb which did not work out well at all, so he went back on Abilify but at a very low dose. She thought with his symptoms of Tardive Dyskinesia and Akathesia, that the old APs would be more likely to cause those symptoms. It did not sound like she approved of using them, which might be an agency decision. I agree that his ADHD, anxiety disorder and language disorder could go along with his Autism. I am glad that they clearly seen those the Autism and Bipolar, because those are what I have considered his main diagnoses for years now. I have always doubted the ADHD. I found it interesting that he seemed to think the autism was his primary diagnosis with mood disorder secondary from the way I understood what he wrote. The reason that was interesting to me, is because when he was three he got the Bipolar diagnosis, but did not get the Autism diagnosis until age six. I was happy to finally read this evaluation. IDK why the 2nd opinion's doc did not want to just give it to me. They were pretty insistent on only sharing it with doctors. That's why I am glad the current psych nurse is so awesome and gives me copies of everything lol.
Tuesday, May 7, 2013
Results from Liver Biopsy
Today Honeybunches had an appointment with the GI doc to get the results of his liver biopsy. There was not any cirrhosis found, which is great news. They did confirm that it's not just NAFLD, it is NASH aka Nonalcoholic Steatohepatitis. The link provides more information about that diagnosis. He lost 6 1/2 lbs since going on the Metformin. That's awesome news! He is down from 129.5 to 123. The GI doc said to keep Honeybunches on the high dose Vitamin E, because that can help with liver disease. The pdoc had placed him on it for other reasons including to help with the side effects of his medications. It is great to know it helps with more. He also said with 5% weight loss the liver can begin to heal itself. 6 1/2 lbs is 5% of his body weight, but I hope the weight keeps coming off. He'll see Honeybunches again in three months and ordered more blood work to do before that appointment to check his liver enzymes and stuff again. In two months, he wants me to try to discontinue the Prilosec to see if he still needs it or not. He mentioned that sometimes what looks like reflux can actually be an allergic reaction to the GI tract. He said in the future he might want to do an endoscopy to look and see what's going on if symptoms continue.
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