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Post by chiaroscuro on Oct 27, 2011 16:09:58 GMT -5
Unfortunately not bros, I am in western PA
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Post by bros on Oct 27, 2011 16:49:47 GMT -5
Unfortunately not bros, I am in western PA Any good childrens hospitals in your area? Like I know of CHOP, but that is in philly.
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Post by chiaroscuro on Oct 27, 2011 19:42:52 GMT -5
bros,
The Neurologist is from Children's Hospital...I am going to look and ask around for good recommendations. I wish I lived closer:-)
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Post by healthy11 on Oct 27, 2011 19:45:24 GMT -5
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Post by hsmom on Oct 27, 2011 22:45:06 GMT -5
Have you looked into the Pediatric Neurology Division at the the U of Pittsburgh Medical Center? This is their website: www.chp.edu/CHP/neurologyBros, I wonder whether your neurologist knows someone there.
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Post by bros on Oct 27, 2011 23:20:52 GMT -5
Have you looked into the Pediatric Neurology Division at the the U of Pittsburgh Medical Center? This is their website: www.chp.edu/CHP/neurologyBros, I wonder whether your neurologist knows someone there. Probably. The neurologist I was going to recommend if she was close to NJ knows a lot of people (or his name is widely known throughout NJ), as I can just mention his name and they'll go "Oh! You were one of his patients! I know him! He's a great guy, how's his brother doing?"
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Post by eoffg on Oct 28, 2011 5:38:15 GMT -5
Hi Chiaro, The correlation between the activities and the triggers is important information to know. So rather than ask, you might tell her that you want to know! You mentioned the 'abnormal spikes in his right centroparietal region'. Where this region is involved with Prosody; rhythm, stress and intonation. It is also where the length of syllables and phonemes are defined. This region is also used for encoding and retrieval of rhythm. Though it also involved with recognizing wrong words in a statement. I would suggest that the correlation between abnormal spikes and particularly activities, is really the most helpful information?
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Post by bros on Oct 28, 2011 6:45:24 GMT -5
Hi Chiaro, The correlation between the activities and the triggers is important information to know. So rather than ask, you might tell her that you want to know! You mentioned the 'abnormal spikes in his right centroparietal region'. Where this region is involved with Prosody; rhythm, stress and intonation. It is also where the length of syllables and phonemes are defined. This region is also used for encoding and retrieval of rhythm. Though it also involved with recognizing wrong words in a statement. I would suggest that the correlation between abnormal spikes and particularly activities, is really the most helpful information? For me, having a buildup of abnormal spikes in my brain caused some... cognitive delays. But one case does not mean it happens every time.
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Post by chiaroscuro on Oct 28, 2011 11:28:07 GMT -5
Hi eoffg,
From what you describe, it sounds like a lot of his difficulties are stemming from this area. Parts of his prosody of speech seems intact if my understanding of it is correct; His inflection & pitch seem fine and he is very expressive and can convey emotion in speech/reading but as you know (through our e-mails) his rhythm is faulty and in music when singing it becomes exasperated,where the words are strung together muddled, improperly used and then he loses pitch. My concerns for his difficulties with singing have always been looked at separately but I (in my gut ) always felt there was a correlation.
Though it seems his receptive end of prosody is O.K at least in regards to understanding sarcasm/emotion maybe that is where his CAPD symptoms stem from when he can't always distinguish words from similar sounding ones. I also would like to know the correlation between his sensory difficulties that he exhibits with certain sounds(Holding ears) that are tolerable to most of us.
If it were impaired since he was a baby (as she suggested) and it is the area that encodes and defines phonemes, syllable length and recognition of wrong words & phonemes then would he have filed them wrong when learning them too?Which makes sense that the first SLP noted he had a phonological disorder. Do you think this is where his word retrieval difficulties come from too?
What doesn't make sense is that throughout his evals he is never offered therapy and there is always a part that is inconclusive where they send him for more evals. As his Mother I know my son better than anyone and have so much love and interest in helping him to succeed in life to his fullest potential, far beyond his academic years. Yet as a parent, I am sadly discredited. Either I am too over protective doing too much or too laid back. It is sad to think my son is 8 years old ,with all of my protesting and out reaching, and his history of difficulties & symptoms - has never been identified by the Medical Field/or school or offered help. I feel I have been battled every step of the way. To find out now my son had brain damage from birth and has flew under the radar? I had been forced to go this alone & to become the therapist for him and fortunately I instinctively (out of great Love) did many of the things they should have been offering him. I feel that is why, coupled with his wonderful determination and demeanor that he has made such progress.
My heart aches for him and all of the children who have to carry the weight of their disabilities on their shoulders while contending with other peoples ignorance .I pray that I can muster even an ounce of the courage that our children exhibit everyday and be a good advocate for him. I wish I had known the collective wisdom of this forum and you back then. I would have been able to make these connections early on and got him the help he deserves. Thank you so much for helping me understand his difficulties on a much deeper plane. I could never express how much it means.
I went through great lengths to gather the activities for his EEG to try and mimic a typical school day for him to try and elicit a response. It is important to know if one or more of these activities are what did show up since Photic and hyperventilation failed to elicit a response. I feel she misconstrues my efforts to understand my sons difficulties as me trying to self diagnose him. So if I bring up these correlations and ask questions, in her mind it only validates her assumptions about me but if I don't we don't make progress for my son anyway. It is very frustrating. She seems to be a good neurologist but because of this we can't build trust or communication which is so important.
If you have any other insights or questions please share
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Post by chiaroscuro on Oct 28, 2011 13:12:04 GMT -5
bros,
I asked her if she felt that the new findings could be separate and not directly related to his cognitive difficulties. She said No that she feels that they are directly related to the area of the scarring and did tell me that it is imperative that I follow through with the Neuropsych eval which I credit her. I wish I knew a way to open the lines of communication. So my dilemma is Do I stay put with her and wait and see how she acts after the Neuropsych Eval (hopefully this will piece together the puzzle)and try to build up a rapport or start over & get a second opinion within the group of her peers. I would like him to stay with Children's Hospital if possible.
I also do not have experience with how Neurology departments typically work. Is it typical to wait over ten days after EEG and call myself to get abnormal results, wait two more weeks for an appointment, then have them cancel it for an emergency and wait two more weeks + 1 hour past our appointment time only to have your Neurologist ask Why are you here? I want to be proactive and do not want to over react but also do not want to waste time either.
I appreciate your input and experience bros :-) any suggestions?
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Post by chiaroscuro on Oct 28, 2011 13:25:05 GMT -5
Thank you healthy and hsmom for the links and help hsmom yes, this is where he is being seen now. I would like him to be able to stay within Children's.
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Post by bros on Oct 28, 2011 13:52:45 GMT -5
Get a new doctor.
Cancelling for emergencies happens, one time I had to wait 2 1/2 hours for my neurologist because he had an emergency earlier in the day.
Waiting 10 days for hearing about an abnormal EEG (and having to call about it) is absolutely ridiculous, especially since they are at a hospital.
Did you have an appointment scheduled later in the month or something to go over the results? If so, that makes sense, them not calling you. If not, absolutely ridiculous.
Waiting can be common, I usually wait 15 for my current neurologist, but as I said, I have waited up to 2 1/2 hours.
The neurologist asking why you are there is just ridiculous. Get a different one in the practice. Do they have biographies of the neurologists on the hospital site? If so, see if one specializes in chiari malformations or neurophysiological issues and learning disabilities.
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Post by chiaroscuro on Oct 28, 2011 14:46:31 GMT -5
Thanks bros,
I did not have another appointment scheduled. When leaving the Epilepsy Unit I was told I would be contacted by the Neurologist after the results were reviewed. I waited 10 days called and assumed the results were negative. I got a call back from the nurse who told me it was abnormal and told me not to leave him in the bathtub alone, so forth and gave me basic Seizure protocol. She told me the neurologist needed more time to review the results/video but wanted me to schedule appointment to discuss the findings. The canceling for emergency I can understand but the asking me why I was there, reading the EEG report like it was the first time she had seen it and not allowing me to ask questions really made me uneasy. I asked her if she thought his floppiness episodes as a toddler were related (He at times when you would pick him up he would drop his weight and head down) and she asked me "When was he floppy"? I had told her this at two other appointments as well as my on my original paperwork. She also does not even speak to my son during the appointments.
How do I go about finding someone within the practice without upsetting the group. Do I just say I am wanting a second opinion or voice my concerns about the Neurologist? Sometimes groups can be very "clicky". I do not want anything to hinder these assessments.
Thanks again bros, I'll check out their bios.
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Post by bros on Oct 28, 2011 15:26:18 GMT -5
The floppiness does sound like a seizure if he was unresponsive. Look at the biographies of the doctors on the hospital website (Or if you can't, look at google, and then the PA Medical License Site, I know the NJ one lists other areas of certification - www.licensepa.state.pa.us/) to see if any of them would be better suited to your doctor. Then call the doctors office, say that you want to switch to the other doctor because you believe that they would be a better fit for your child because their area of specialty/research/study is what your child has.
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Post by chiaroscuro on Oct 28, 2011 17:21:32 GMT -5
bros,
I am not sure if his floppiness was a seizure or not because it would happen so quick and when I would lift him up to see his face, I would say "what are you doing silly and he would smile and respond". So if it was it would of had been so quick (like seconds) in duration and he didn't seem disoriented after-wards. That is why I never suspected seizures. So I am not sure. But when I first told her she did seem concerned.
I appreciate the link and suggestion for how I should present the reason for change in doctors and it makes perfect sense. Thank you for helping me think clearly and helping my son :-)
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Post by bros on Oct 28, 2011 17:48:25 GMT -5
bros, I am not sure if his floppiness was a seizure or not because it would happen so quick and when I would lift him up to see his face, I would say "what are you doing silly and he would smile and respond". So if it was it would of had been so quick (like seconds) in duration and he didn't seem disoriented after-wards. That is why I never suspected seizures. So I am not sure. But when I first told her she did seem concerned. I appreciate the link and suggestion for how I should present the reason for change in doctors and it makes perfect sense. Thank you for helping me think clearly and helping my son :-) No problem. I had one neurologist who I just did NOT want to go to anymore. Luckily we had to drive an hour to see her every 6 months so we just told her I found one closer to home
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Post by eoffg on Oct 29, 2011 7:21:26 GMT -5
Hi Chiaro,
The floppiness episodes that you wrote of, are also an indication of 'low muscle tone'. Which is nothing to do with strength, but rather it is slow muscle contraction response. Though you wrote that this specifically occurred when you 'picked him up'? Where you might consider the confusion that being 'picked up' and suspended in the air, causes our muscle control system? As you sit reading this, muscles throughout your body and limbs, are maintained in a certain state of balance, to keep us in that position. Where we use extensor and flexor muscles, to keep this balance. But when we are 'picked up'? We actually have to take up some sort of 'being picked up posture'? Where most muscle groups, really have to be 'turned off'? Legs aren't needed, so they can turned off, and just left 'hanging'. Torso muscles such as the back muscles can also be turned off, as it doesn't need to be held in a position. So basically what I am suggesting, is that the floppiness, could quite likely be an initial reflex to being picked up? As a transition stage. So that all muscles are first put in a relaxed state. Including his neck muscles. So that his 'floppiness', could have been his brains response to being picked up? Where at the moment before being picked up, all of his 'muscle systems' were being held in a state of balance. Which were probably holding him in a standing position? Then when he was suddenly picked up, their is no posture model for his muscle systems to transition to? It's really more of a case of? Shut everything down first, and then observe what needs to be turned back on? So that when his head flopped, as a baby, his head would probably have been supported when he was picked up? So that as toddler, he may have been recalling the relaxed posture of when he was being picked up as a baby? So I would rather suggest that his 'floppiness' was nothing to do with a seizure, but rather a reflection of the stage of development of his muscle control. But as for the neurologist, they are really just 'brain engineers', which shouldn't be confused with neuro-psychologist? So that a different neurologist, probably wont make any difference? But we really need to get as much information as possible from the neurologists, about the correlation of 'spikes' with the different activities that you carried out. With the activities that you carried out during the EEG, and the neurologists lack of concern with them? It is quite possible, that the activities that you used, haven't been used before with an EEG, as a relevant diagnostic method? So that it is understandable how the neurologist would be concerned with how you may interpret the spikes ? What I rather suggest, is that the neurologist needs to be given a clear explanation of the rationale for various activities during the EEG. Also what particular signifiers the activities were being used to identify? Then how a range of different activities were used, to identify correlations within them. I can understand that she feels that might misconstrue the results? So she needs to be given an explanation of how you will actually interpret them.
Though you also wrote: 'Photic and hyperventilation failed to elicit a response.' But what it actually said, was that it failed to elicit an 'abnormal' response'. So that they were both normal.
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Post by chiaroscuro on Oct 30, 2011 17:13:20 GMT -5
Hi eoffg, I do understand how she might misconstrue my efforts too. The problem is that she doesn't give me the chance to discuss his history, my concerns so the lines of communication have no medium to become established. She cuts me off before I even complete a sentence. I have asked her again what type of Chiari Malformation he has, which I see as an appropriate question. She just quickly says No, No at this time it is not an issue, I feel he has enough space. I believe her impression of me started when she was ready to sign off and I had asked her for MRI and outlined my rationale and asked her if she felt it was warranted. She agreed but insisted it would not show anything but to alleviate my" fears" she would. When she found the malformation & scarring she said it was incidental and not related to his cognitive difficulties. Then she agreed to prolonged EEG, never called me with abnormal results etc. Now she says they are related to the area of scarring but will not elaborate. I understand she is the brain engineer and that Neuropsychologist and her will collaborate and correlate their findings. I do not need to know because I want to evaluate these findings or pretend to understand the complexities of these sciences/fields/and the intertwinings of disorders. I do need to know and have confidence that the person who is looking at my son has his best interest in mind and is taking his history/current struggles in to consideration (with what pertains to their field)when correlating findings. I do not want a negative presumption or nonchalant attitude to skew results. Also Since she will be following my son in the future I want somebody that interacts well with him so that he feels comfortable to share and partake (as appropriate) in what is going on with him. I was told by the epilepsy unit to gather materials/activities for him to do to mimic a typical day for him. So the activities should not be a surprise to her. I did not bring in bizarre equipment :-) just reading/writing/math/memory games /music. Other than what I brought, he watched t.v, played a video game, ate and slept as well as three minutes each of hyperventilating and exposure to different light frequencies. I do understand that the photic and hyperventilation measures did not elicit an "abnormal" response. I just overlooked it when typing. I feel it is appropriate for me to know what/if any of the other activities were a trigger since these are all things that he is exposed to everyday. As you know, the idea of seizures took me by surprise during the CAPD/Language Eval. The Audiologist felt that her testing was inconclusive due to starring spells that she noted during the parts where his disordered range scores arose. She and the SLP recommended that he be seen by a Neurologist to rule out Absence Seizures or any other medical reason for these spells. In my mind, any number of things could have caused the starring. Had he been having difficulty distinguishing the target and similar sounding words could have caused this reaction(CAPD?). Or if he is a visual thinker he could have been converting words into mental pictures. Also the possibility that whether he has low muscle tone? or he could have been fatigued. The list goes on and on including ADHD inattentiveness(which nobody who works with him suspects) to just being young and maybe not fully understanding what was being asked of him. I was hoping by being there that some of these could have been ruled out. So it was there recommendation that brought me to the neurologist. I am happy it brought to light some issues we did not know about and may be part of the puzzle that had been missing. Now I just want to know the severity,& risks to be prepared (in case). Should it be enough for me to hear "He has a heightened risk for seizures but it hasn't happened in 8 years so don't worry about" or "If his Chiari Malformation becomes an issue you will need to talk to neurosurgeon but you do not need to know the type"? I gather it is probably Type 1 because of her saying it's mild but why can't she just say it. What does she think I will do with knowing the type other than educating myself and alleviating my concerns. As far as the activities are concerned It is not like I am going to stop him from reading,doing math, listening to music so forth but if his chances of seizure during one of these are increased it is helpful to be prepared since he does these at school and at home. It also could help to make a some connections that have been previously overlooked. So how do I give her a clear picture for my rationale when she won't allow the discussion to take place. That is my dilemma and the main reason for considering a change in doctors. The floppiness episodes could be any number of things too. What you suggest makes sense as a possibility.Also since he has a Chiari Malformation and you have told me before that can put undo pressure on the spinal cord and cerebellum. Could it be possible that when picking him up it could have caused dizziness or for him to black out due to this change in posture? It stood out to me because I have four children and none of the others did this. He did not always do it, so I always took it for silliness,or playfulness which he is both or an awkward reaction to his emotions. Hopefully if these types of behaviors are due to the scarring, Chiari or anything like HFA etc. they will be uncovered at the Neuropsych eval. It has all been so confusing and conflicting.Hopefully we are nearing some sort of clarity to his issues and we will be able to offer him strategies and therapies to help him cope soon. So the question still remains. Are my concerns and issues with her valid? Should I stay and try to build an unlikely rapport so I can explain my rationale and is her dismissing tone potentially harmful? I understand that my son's case is not an emergency but I have been Naive in the past and do not want to jeopardize him with blind trust. If you have an alternate perspective or any experience to add please share. I need all the perspectives I can get. Do Neurologist usually write up a report showing their clinical correlation to the abnormal findings in the EEG?
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Post by bros on Oct 30, 2011 18:19:02 GMT -5
She should tell you everything.
Your concerns are valid. You should find a different neurologist. The doctor who interprets the EEG ALWAYS writes a clinical report.
You SHOULD worry about him possibly having seizures. Perhaps get a medical alert bracelet for him that have it say that he has a Chiari malformation, so if he were unconscious and you were unable to be reached, medical personnel would be aware of it.
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Post by chiaroscuro on Oct 30, 2011 21:31:00 GMT -5
bros,
Thank you so much. I often think of you and your personal experiences that you have shared, while trying to decipher these new findings and I take these new risks with my son very seriously. I am so appreciative for your help and because of you the first thing I did was contact the school and they drafted an emergency action plan should he have a seizure that was sent out to all teachers and personnel. I am so sorry to hear about everything you have been through but very encouraged by how much you have accomplished and shared & soooo happy you are going to become a Teacher. We need more teachers like you bros and you are such an asset to parents like me who are in the beginning phases of this all. I commend and have much respect for you and everyone here at millermom :-)
eoffg, you have helped me tremendously as well in unraveling his issues , and I thank you for the time you have taken to help him, your wonderful insights and hope you make many break throughs in your studies and research trials. Where would we be without all of you :-)
Thank You!
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Post by bros on Oct 30, 2011 22:26:14 GMT -5
A medical alert bracelet would be useful anyway. What if he is at a friends house and the parents cannot contact you for some reason? I got one after I had a seizure in school. The school knew I had epilepsy (It was on my emergency card) The nurse kept telling me "nope its not a seizure you don't have epilepsy" it was a seizure, and not syncope like she believed. Prepare for the worst and hope for the best. You'll probably end on somewhere middle of the road if you follow that
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Post by chiaroscuro on Oct 30, 2011 22:38:32 GMT -5
Great advice bros- Thanks I'll look into the bracelet
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Post by bros on Oct 30, 2011 23:07:49 GMT -5
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Post by chiaroscuro on Nov 1, 2011 11:11:18 GMT -5
bros,
Thanks for the link.
I have a question for you. I called the Pediatrician to ask if the Neurologist had written the report and if I could pick up a copy. They said she had written a preliminary report on the 26th (the day of our appointment) but it was not Authorized for patient release,yet. They said they would call the office and let me know when to expect final report. Is this normal practice in your experience to not be able to see preliminary? Also doesn't it seem like a long time to wait to write a preliminary report? His EEG was in Sept. ?I have a meeting with the school and would have liked to have had something to share with them.
Thanks again
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Post by bros on Nov 1, 2011 13:30:15 GMT -5
that seems like an extraordinary amount of time to take to write a report. There is nothing that is not allowed to be released to the patient, so if you wanted, you could ask them to send you the preliminary report right now and they would have to, under HIPPA
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Post by chiaroscuro on Nov 2, 2011 6:40:03 GMT -5
thanks bros,
I am waiting for pediatrician to call me back to get his take on the report. I do not know why Neurologist is keeping me in the dark? I suspect to buy more time because she hadn't even went over results until the day of our appointment. It just seems so unprofessional and negligent to me but I wanted to first ask your(& others) opinion to make sure I am not just overreacting and that I am being fair and grounded.
I'll let you know :-) Thank you so much
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Post by bros on Nov 2, 2011 12:22:39 GMT -5
Pediatrician might not know much about neurology, they'd pretty much read off the report.
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Post by eoffg on Nov 3, 2011 4:11:22 GMT -5
Chiaro, I do wonder about the skills of the neurologist, as she may have the skills to give the tests, but still learning how to interpret the results? If perhaps she is an intern? Which could explain why her preliminary report needs to be authorized? The best solution might be to get all of the test results, and take them for a second opinion?
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Post by chiaroscuro on Nov 4, 2011 18:55:42 GMT -5
Hi eoffg, I spoke to the neurologist and she said that she is going to send the signed copy over to his pediatrician and that it will have the same information that the unsigned copy has minus some typos. I do not know if that is the real reason or not but it still raises some red flags for me and I am going to seek out a second opinion. She did not even write the preliminary until 2 days after our followup appointment which was 35 days after EEG. So it now has been 1 month and a 1/2 and I do not even have a preliminary report. I just can't understand why. I also had the meeting with the school and they said that he is doing really well. The reg teacher says he has a B in reading and that he has satisfactory scores in comprehension,Phonics/word analysis, vocabulary and written expression. The only needs improvement score is in fluency. I do not see these improvements in his work samples he brings home and the reading specialist also says she has conflicting results. She has him at 25 words per min with an accuracy of 83% and a 1 on comprehension. He has an A in Math and reg teacher said his problem solving ability is exemplary which I am glad they are seeing. His speech teacher (Who is a SLP fill in) said that he met two of his goals already & one of them with 100%accuracy hmmm. I asked her specific questions about how he is doing, and with his word retrieval issues and she said she was not aware he had any and she had never even been briefed on the children's hospital report but will read it today and had not talked to the original school SLP regarding my son because she is on maternity leave and she didn't want to bother her:( I asked her if any of her assessments were done in free conversational speech and gave her examples of some things that I am concerned about? For instance (He still leaves some parts of words out) If he were to say I like to play the guitar he may say I like to play the tar. She also said she didn't know that he had a language delay or phonological disorder with cluttering written on his first eval at 4. Which they have a copy of as well. I am so frustrated right now. I have a parent teacher conference coming up and I plan on bringing in the writing samples that he supposedly scored satisfactory on. Some are completely blank? Others you can hardly understand them and the answers are wrong. For example He was asked to write about how John Smith helped the American colonies? He wrote John Smith he help the people of John Smith become better. worker? This was completed together in Class. It also says explain why the pilgrims had a special celebration? Here is what he wrote ...thay whated to thang and that wasthe first thangthantgiveing. Sounds like he is just restating the questions to me and spelling them wrong,messy and has reversals too. He supposedly has a B in spelling? I am very confused. I would love to believe he has made such progress but how can they not see how he struggles. I have a feeling it is because he has a Neuropsych evaluation coming up. I am feeling so defeated but I am trying to press on remembering that many of you have stood where I am now and I am encouraged by your stories and accomplishments. I'll post back once I have the preliminary report. Sigh
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Post by healthy11 on Nov 4, 2011 19:50:47 GMT -5
I can understand your frustration. It's been awhile since I looked at my son's attempts at writing when he was 7/8 years old, but from what I recall, he couldn't even compose half of what your son is doing. In fact, I still remember my son's 4th grade teacher showing me a test where the students were supposed to describe conditions the pilgrims experienced on the Mayflower, and my son printed "It was croded and smele" or words to that effect. (He was trying to say crowded and smelly, and if that wasn't bad enough, since it was 4th grade, the teacher was expecting several sentences, not just one.) My son's teacher knew that he was capable of giving a much more detailed explanation, so she allowed me to bring him to school early the next day, and she gave him the questions to answer orally, but not all teachers were that accommodating.... When you ask your son to verbally explain things (like how John Smith helped the colonies) does he answer in the same confusing way, restating the question, or is he able to explain things better when he's not required to write?
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