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Joined: Aug 2009
Posts: 102
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OP
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Joined: Aug 2009
Posts: 102 |
Hi All- I'm totally flummoxed. My DS9 had an eval about 6 weeks ago for LD, etc. Psych hadn't received the report from his teacher but told me that he didn't see Asperger's or LD. He just saw an anxious, depressed HG kid. We discussed at length homeschooling as being a great alternative. I received the written report yesterday, and it was completely different. He diagnosed mild PDD-NOS and possible dysgraphia. The report said that the teacher eval coincided with behaviors that the tester observed as well, but that we don't see at home near as much. He recommended special services as well as continuing in the gifted classroom, with access to online math for further acceleration. Well, I have him home now. He is MUCH better but about once a week there is an off day, very rigid and needs lots of easy handling to talk him through. My concern is- Did I pull him away from services that he needs? Can I do them at home? I felt comfortable taking on the ability to teach him but I don't know about the special ed teacher role. Although, since he's better now at home, I'm probably on the right path. Thanks everyone-
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Joined: Aug 2008
Posts: 847
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Hi! About the PDD-NOS, I have to say that I am not a fan of that lable because it really doesn't tell you much...and especially Mild PDD-NOS, I would suspect that many HG+ would appear to have that. Not sure if they shared with you what that diagnosis means (hopefully they gave you some information) but basically it means that they met some of the criteria for a PDD (such as autism or aspergers) but that he did not fully meet the criteria in order to diagnose him. And then to add the word mild in front of it would mean he meets even less of the criteria. I was a clinical social worker (now school social worker) for years and I did diagnose PDD-NOS at times, but not often. I saw some quirky behaviors and some socialization issues, but I think that often comes along with the territory of HG/PG kids. I certainly have a quirky PG kid that I suppose may meet the criteria for mild PDD-NOS in some ways. It's hard to say as I haven't met your DS at all. If you are questioning it you may want a second opinion with someone who is familiar with HG kids.
I give you much credit for starting the homeschooling! I know that homeschooling works great for lots of kids and wish you the best. And if you give it time and it is not working out, you can always change your mind. It sounds like the school is being supportive which is great. I don't think that schools would support a child with PDD-NOS any better than you could on the teaching end. And I am glad that you are noticing some positive changes in him! Good luck!
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Joined: May 2009
Posts: 229
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hi learning mom we are in the same boat with a quirky kid with a PDD-NOS diagnosis. My take on how the diagnosis works is that there are lists of symptoms that fall into Language, Social, and Behavior categories. To have autism you must have 7 things that fall across all three domains. To have aspergers there is a whole separate list of (very) specific things. To have PDD, you can't have either aspergers or autism but have three "symptoms" from the lists. The funny thing about it is it says nowhere that those three things must be across the three domains in order to get PDD-NOS diagnosis. So presumably a kid who is socially ok but who has quirks of language and of behavior (such as fixation on subjects, or flapping hands).. can end up with the PDD-NOS label. However this totally misses the boat as far as PDD. Many think the social piece is the defining piece of it and without real pervasive social issues its just not really PDD at all. This is alluded to in James Webb's book. What is interesting is the DSM new version is currently being written and is streamlining the diagnosis as "Autism Spectrum Disorder" and eliminating PDD-NOS and Aspergers (which is controversial).. But what i do like about the new diagnosis is that it gets to the POINT. and demands a pervasive deficit in three domains in order to get a diagnosis. irene
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Joined: Aug 2009
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My feeling right now is that he falls into a gray area that may never be well defined. When I received the report form to evaluate him, I had to call back for clarification because what exactly is 'sometimes, often and always'. The teacher reported on Asperger's Disorder Scale (GADS) that he sometimes seems unaware of social conventions, lacks sublety of emotions and requires an excessive amount of reassurance if things are changed or go wrong. 'He becomes very preoccupied with certain subjects, dispays superior knowledge in certain areas and demonstrates exceptionl memory. States she 'was concerned that he becomes preoccupied with certain subjects in a manner that is much more intense than other children'. She also noted that he is very kind and loving child, has a zest for learning new things, can be very humerous etc... DS was in a full time gifted program that had a 98% entrance but lower numbers were admitted to fill seats. A lot of this resolved upon bringing home to homeschool. I starting to feel that the 'mild PDD' is a wimpy diagnosis but I don't want to fall into denial if something is present and needs to be addressed. Does anyone know what the special ed services would look like for that kind of diagnosis?
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Joined: May 2009
Posts: 229
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hi learningmom my distrrict puts all kids on the spectrum (including PDD-NOS) into an "autism" classification and they receive mandated services. I am in New York State and i think the mandates vary from state to state. My son gets 1 period per day of resource room (just for kids on the spectrum), two group sessions of speech per week (to work on pragmatic language) and a paraprofessional that he shares with one other student. He also participates in an enrichment program. This setup has been great for him, though i sometimes disagree with the diagnosis. He gets so much help and i really can't complain. The diagnosis did open doors for all this. NOt all districts have this type of program, though.. and it all depends on the needs of the child.
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Joined: Aug 2008
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Does anyone know what the special ed services would look like for that kind of diagnosis? It varies based on the school...but as far as schools are concerned that diagnosis can get him the same services that a diagnosis of aspergers or autism can get him if needed. might be some pull-out, social work services, social skills groups, etc. Or may just be classroom modifications. My feeling about diagnoses in general is that if it fits and it is helpful then it's not a problem. When it doesn't fit, or if there is no need for it to get certain services I don't see much of the point. I think it is normal to question it and doesn't mean you are in denial. I am full aware of the criteria for diagnosis and a lot of these PG kids have some elements of the criteria but are still not diagnosable. For example, my DS5 (PG) used to be very sound sensitive (not so much any more) and used to spin in circles and started a bout of hand flapping for weeks that has since gone away. He has lots of little quirks here and there. Sometimes he doesn't recognize things that you would think he should (like last night we went to a school related event where he saw a friend from his class from the side and said "that looks just like my friend from school" but didn't realize that it was his friend. When I asked if it was him he said "I am not sure, but he is wearing the same shirt he was earlier today" LOL) He has great eye contact at times, and other times just zones off when people are talking to him. He is a very empathetic and caring child, but sometimes something can happen and has no reaction (like his sister could have hurt herself and be crying and he would say "mom, what is for lunch today?") I could go on with more little quirks because the list continues. He is who he is and we love him. Of course I could also make a long list of how he completely does not meet the diagnostic criteria for PDD, but you never know how things would turn out of a rating scale were completed on him. You have to look at the whole child. But like I said, if the diagnosis is helpful than it can't hurt. It's not like the diagnosis can't be taken away at some point if it doesn't fit.
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Joined: Aug 2009
Posts: 102
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OP
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Joined: Aug 2009
Posts: 102 |
Since I took him out of public school, we've been fortunate to have found a group of 6 boys that he really enjoys. They range from his ago to about 12 and we get together 2-4 times a week. He doesn't seem to be anymore intense than any of the others and they all seem to interact really well. This would have been different than what was seen in school. I see him as being very flexible at home unless a video game is involved. LOL. When we do school, there is still a puzzling tantrum that occurs about once a week and I'm not sure what it is yet. I think it's anxiety /perfectionism and that's the way I'm approaching it for now. It's helpful to me to hear what the services are in the school system, to see if I can arrange them at home or elsewhere.
Shellymos- We had an incident similar to the one you described with you daughter that just stopped me in my tracks. Flooded kitchen and he was discussing a video game. I just thought 'this isn't right'.
Thanks for the help-
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Joined: Apr 2010
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You might follow up with the diagnosing dr. to make sure there are no crossed wires; why was the written report so different from the conversation? It's very legitimate to ask directly.
How are your DS's social skills? When he's with a peer, can he have a meaningful two-way, multi-turn conversation? The social impairment is one prominent thing that would differentiate a gifted kid on spectrum from a gifted kid otherwise; the non-spectrum kid can have a real conversation, even about topics that they don't obsess about, whereas the spectrum kid might only be able to have the conversation about their special interests, or introduce the interest into every conversation. The rigidity is a hallmark, too, but not a completely defining one IMO.
You might want to get a second opinion from someone who specializes in kids on spectrum; they might be able to tease out these issues more thoroughly and figure out what your kid needs. You may also be able to get services from your district (PT/OT/speech) even while homeschooling.
Dee
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Joined: Aug 2008
Posts: 847
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Ok, my ds10 does this ALL the time and his only diagnoses are anxiety and dysgraphia. Talking about things totally unrelated to a crisis. He will get frustrated that nobody is listening, and all it takes is for me to say, "you could help here so we can listen to you sooner" and he starts pitching in. It's like there's some sort of disconnect. Or is it normal child. DS5 does this with other things too. I remember mentioning this before and lots of other people's kids did the same thing. The "spill reaction" (or lack of reaction) is classic...something will spill and he will say "oh no, I spilled it" without reacting to pick it up. Or he used to just stare at it spilling. He is getting better with this thankfully but it drives us nuts. I don't see a future as an EMT or something that requires quick movement : ) Nobody has ever suggested anything on the spectrum for him. Though I think he has something whose label hasn't yet been dreamed up. I am still waiting for "unique syndrome" or "quirky disorder" to become labels. There couldn't be actual criteria though because everyone is so different : )
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Joined: Aug 2008
Posts: 847
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Member
Joined: Aug 2008
Posts: 847 |
Since I took him out of public school, we've been fortunate to have found a group of 6 boys that he really enjoys. They range from his ago to about 12 and we get together 2-4 times a week. He doesn't seem to be anymore intense than any of the others and they all seem to interact really well. This would have been different than what was seen in school. I see him as being very flexible at home unless a video game is involved. LOL. When we do school, there is still a puzzling tantrum that occurs about once a week and I'm not sure what it is yet. I think it's anxiety /perfectionism and that's the way I'm approaching it for now. It's helpful to me to hear what the services are in the school system, to see if I can arrange them at home or elsewhere.
Shellymos- We had an incident similar to the one you described with you daughter that just stopped me in my tracks. Flooded kitchen and he was discussing a video game. I just thought 'this isn't right'. LOL, there are lots of moments where I think things are odd with DS5 too. When in crisis situations like that, when you mention it to him does he get it? Like when DS is talking about something completely different while someone is hurt...when I explain it to him he usually gets it and is able to get how non-empathetic he is being. He generally is very caring and asks what is wrong and what others think and all that. That is great you have found a good group for DS to mix with. I have noticed with our DS that he does much better with older kids, he does okay with kids his age but he doesn't interact verbally as much as just goofing around. With older kids and adults he enjoys conversation with them. And about the puzzling tantrum your DS has, I am not sure but our DS goes through times and moments where he is more emotional about things and overreacts. It isn't that common and he is a very laid back kid...but when he gets like that we are always baffled.
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