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#1 of 45 Old 04-14-2011, 07:16 AM - Thread Starter
 
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My DS (6y.o.) has received a dx of Asperger's and Anxiety Disorder NOS via a private psychological assessment that we pursued. However, we are not absolutely confident that these diagnoses are correct (primarily because the Asperger's criteria do not seem to be met consistently) and are getting a 2nd opinion. One of our concerns is that our DS does not currently show any concerning behaviors at school; he does misinterpret social situations and can get very upset and anxious, but he holds it together until he gets home. He used to show some difficulty tolerating changes in routine at school and did not play with others much, but he is doing better with these and his current teacher has absolutely no concerns. The primary reason we had the assessment done was related to explosive outbursts at home (which are severe, but periodic in nature and appear to coincide with increased stressors outside the home).

 

I wonder how wise it is to disclose these diagnoses to the school (and the community at large I suppose) when he appears to everyone in those environments to be managing well (although of course we do have the impact at home depending on how he is dealing with stressors in other environments). I am particularly concerned because once you disclose a diagnosis, there's really no way to take that back... and I wonder if he will even truly meet the diagnostic criteria in the future.

 

The funny thing is that I work with kids with a wide variety of diagnoses and I actually encourage parents to seek out evaluations to get the correct "labels" for their child so that they can receive the supports that they need in order to succeed. Yet here I am, feeling very conflicted about whether it is in his best interests to share the information...

 

Any thoughts or personal experience?

 

 

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#2 of 45 Old 04-14-2011, 07:51 AM
 
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 6 is a bit young IMO (and professional opinion) to be 100% sure that your son has Aspergers. And since you said yourself that you're not 100% convienced this is the case, I woudlnt tell anyone right now until you are sure. The concern is switching dx's with the school can backfire and make the school take the new dx less seriously.

 

I would focus on the behaviours when dealing with the school and not the dx right now.

 

My ODD dx'd changed so many times it was awful. She went from being Autistc with Dev Delay, to being HF autistic with Dev delay, to being ADHD with Dev delay and autistic tendencies and now she is just autistic with Dev Delay.

 

I do believe that they are removing Aspergers from the DSM 5 and just labelling everything autism from what I have heard. YOu may want to wait until that time, and have his Dx reflect the new autism dx.

 

 

 

 

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#3 of 45 Old 04-14-2011, 10:35 AM - Thread Starter
 
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Thanks for your reply. Lots to think about for sure (especially as someone who tends to overthink everything...).

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#4 of 45 Old 04-14-2011, 04:52 PM
 
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I would hold off on telling the school until/unless you decide to ask for accommodations.

 

Life gets more complicated every year, and some kids on the spectrum develop along their own little timelines, so a child who does OK at 6 may or may not do OK at a later age. It just depends.

 

My DD has Asperger's and the sh*t didn't really hit the fan until middle school.

 

Other kids can look quite quirky at 6 and seem pretty darn normal by middle school.

 

Even when my DD's behaviors become debilitating for her, some of her teachers thought she seemed fine. She shuts down when she's overwhelmed, so she just seemed quiet. They didn't see the other side -- panic attacks at entering the school, banging her head on the table while doing homework, pacing the house in the middle of the night.

 

My DD can hold it together in many situations (or just shut down) but it doesn't mean that she's doing "OK."  If your son's problems at home increase, I suggest seeking accommodations to lessen his stress, even if he isn't acting out that stress at school.


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#5 of 45 Old 04-14-2011, 06:38 PM
 
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I am assuming he does not have an IEP because of the private eval.  There is always the possibility that even if you disclose it, the school is not going to evaluate him because his special needs is not affecting his education.  My only concern is that as he gets older and his peers begin to develop socially, then he may be left behind or sort of left out because his peers and the teachers are not aware of his special needs, if he does have Asperger's Syndrome.  Misunderstanding by peers can lead to other issues, such as being picked on or being bullied.  I am not saying that would happen, but that is always a possibility for children and if he has difficulty interpreting social situations, then there may be a possibility that someone is interacting with him in a negative manner and he may not be aware of it. 

 

If he was my child, I would not tell the school but I would have regular communications with the teacher about some issues he may have socially so she can assist him in the future should the need arise.

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#6 of 45 Old 04-14-2011, 06:41 PM - Thread Starter
 
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Thanks for your input, Linda. DS is similar in that, as the psychologist put it, he internalizes everything at school and then externalizes at home (so school mostly sees him as being a quiet child who follows the rules). We have disclosed some of this to the school as needed and had some small accommodations made for a short time without any of it being official, but I know that we may need to make things official in the future. It's just so hard to know for sure whether it will really be of benefit to him in the long run in a situation like this... time will probably make it more clear, and there really is no need to rush to decide what to do at this point I suppose.

 

ETA - Buttercup - you are correct he does not have an IEP. We are in Ontario Canada, so the process is a little different here and with a diagnosis they will give an IEP (they don't need to do their own eval). However, at this point he is performing at or above grade level so it really is just social and anxiety related issues that would need to be addressed. I would think that some of this could continue to be done informally as long as his teacher/administration are supportive, although I am very aware that social concerns could increase as he gets older. My hope is that we can work at both anxiety management and social thinking/social understanding and over time this will be less of an issue, but I know he will likely continue to have some issues.

 

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#7 of 45 Old 04-14-2011, 08:18 PM
 
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Originally Posted by mysweetboys View Post
However, at this point he is performing at or above grade level so it really is just social and anxiety related issues that would need to be addressed.

 


My DD is above grade level in most subjects, but needed accommodation to pass 7th grade. She has a slower verbal processing speed than average, and lack the ability to ask questions in class (due to anxiety). She has writes slowly due to fine motor deficits. Those thing combined to her not having a clue what her homework was in her classes, or being able to complete it all each night. 

 

He may need accommodations eventually, even though they may not have a thing to do with how bright he is. 

 

You might check into a social skills class for him, now or later, either way. Some kids pick up social skills naturally and some don't. I think it was one of the best things we did for DD. She sometimes opt to not bother interacting with other people (because she doesn't have the same need for connection that most of us do) but she has far less anxiety about social situations now. She's happier and more at peace with herself after the class. Where we live, a certain dx wasn't not required for the class.


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#8 of 45 Old 04-14-2011, 08:55 PM
 
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If it were me, I'd probably hold off on it, especially until you get a second opinion.  I would disclose it on a "need to know" basis if/when accommdations need to be made, etc.


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#9 of 45 Old 04-15-2011, 07:49 PM - Thread Starter
 
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Thanks for the input! We will definitely hold off on disclosing until we have another opinion, and will re-evaluate after that.

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#10 of 45 Old 04-16-2011, 10:58 AM
 
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I live in rural Europe and for us, an ASD diagnosis does not only carry social stigma but also might preclude educational options rather than help with accomodations in school. So we feel we have to be very selective about what we share with school and others outside the immediate family. 

 

We did share that we were going to have DS evaluated because there were some behavioral concerns in preschool (not bad enough for the teachers to push for an eval, but from their reaction I could tell they felt it was an appropriate step on our part) and I thought they ought to know that we were concerned as well and taking steps - though it was mostly stuff we were seeing at home, like explosions, some OCD-looking behaviour, tics and disordered sleep, and increasingly, reports that other children did not want to play with him, which made us decide to pursue the eval (NOT something that had the teachers concerned for some reason). I did mention to them that I suspected sensory issues (trying to reframe rather aggressive sensory seeking). Part of the eval was having a questionnaire filled in by the preschool teachers, which I gathered from them was a rather routine demand so proabably did not raise major red flags. I also mentioned that the psych thought DS' problems stemmed from the huge discrepancy between his clearly very advanced cognitive but possibly delayed socio-emotional development (an issue they are aware of) and that they were pursuing further testing. I did NOT share that they were evaluating for ASD.

 

At this point, though they talked of "some autistic traits" and "needing to watch his development", full-blown ASD is off the table. So we feel comfortable not sharing this concern at all with the school. We do not have the results in writing yet, but I am already planning what to share. I feel they ought to know the minor concerns like that he is "anxious", "highly sensitive", "extremely perceptive", that he is easily overwhelmed in social situations, that there are reasons to suspect, due to his low scores for receptive language, that he may have an auditory processing disorder, which makes him very sensitive to noise, and makes it hard for him to follow verbal directions, that he has problems with body awareness and sensory seeking. I feel comfortable withholding larger concerns -  I want them to think "poor sensitive, anxious kid" not "oh no, disturbed kid" at this point.


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#11 of 45 Old 04-16-2011, 11:28 AM
 
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I think it's a "need to know" thing. If you do not need special accommodations for your son at school then there's no need to disclose the diagnosis to the school.  If you are meeting with his teacher and it comes up, that's not really a formal disclosure of diagnosis anyway. It won't carry from that teacher to your child's school records or be taken into consideration next year.

But if you do pursue school services the diagnosis will be critical in obtaining proper services to support your son in his education. 

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#12 of 45 Old 04-16-2011, 11:30 AM
 
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Originally Posted by mysweetboys View Post

Thanks for your input, Linda. DS is similar in that, as the psychologist put it, he internalizes everything at school and then externalizes at home (so school mostly sees him as being a quiet child who follows the rules). We have disclosed some of this to the school as needed and had some small accommodations made for a short time without any of it being official, but I know that we may need to make things official in the future. It's just so hard to know for sure whether it will really be of benefit to him in the long run in a situation like this... time will probably make it more clear, and there really is no need to rush to decide what to do at this point I suppose.

 

ETA - Buttercup - you are correct he does not have an IEP. We are in Ontario Canada, so the process is a little different here and with a diagnosis they will give an IEP (they don't need to do their own eval). However, at this point he is performing at or above grade level so it really is just social and anxiety related issues that would need to be addressed. I would think that some of this could continue to be done informally as long as his teacher/administration are supportive, although I am very aware that social concerns could increase as he gets older. My hope is that we can work at both anxiety management and social thinking/social understanding and over time this will be less of an issue, but I know he will likely continue to have some issues.

 

If your son continues to perform at or above grade level and has the potential to perform at an even higher level, you may want to address this with the school. His social and anxiety related issues could be holding him back from a more academically advanced program and you would want the school to know of his challenges so they can support him in those areas and help him reach his full academic potential. 
 

 

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#13 of 45 Old 04-17-2011, 06:38 AM
 
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My firend has an 11 year old and is described as what you wrote. He does have Aspergers.

But like PP i would wait until you have a 2 nd opinion to discuss a plan of action and care with anyone.

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#14 of 45 Old 04-17-2011, 09:50 AM
 
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I agree with those who've suggested you hold off for the time being, at least until you're satisfied about his diagnoses. That said, Aspie criteria don't need to be constant and unchanging to be Aspie. My DD has HFA and is a different kid outside the house than inside it. Nobody in the real world sees her meltdowns and tantrums and acting out nor do they see her motor mouth chatting and singing and intensity. She's a watchful little mouse outside the houe and everyone thinks she's all sweetness and sunshine. So, I just wanted you to know that Aspie kids aren't necessarily consistent in their symptoms, how they show them or even which ones they have from one month to the next..


 


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#15 of 45 Old 04-17-2011, 12:03 PM
 
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Wow, a kid who's functional OUTSIDE the home and struggles INSIDE the home. I know the grass is always greener on the other side of the fence, but I wish my son's issues manifested that way. duck.gif

 

So... I have never had a choice about disclosing, and I don't feel that it has had negative consequences to talk about all the assessments and attempted treatments over the years. But if my son was functional at school, I think I'd apply the "ain't broke don't fix it" methodology for a few years at least. I wouldn't want a kid walking into a middle school without the counselor knowing he had a social interaction disorder. (Not that all middle schoolers don't seem to have one.) 

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I wouldn't want a kid walking into a middle school without the counselor knowing he had a social interaction disorder. (Not that all middle schoolers don't seem to have one.) 


lol.gif  When my ASD was in middle school and was in a social skills class, she asked why they didn't have ALL the kids take social skills class. She felt most her class mates could benefit from it.

 


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#17 of 45 Old 04-17-2011, 06:31 PM - Thread Starter
 
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I live in rural Europe and for us, an ASD diagnosis does not only carry social stigma but also might preclude educational options rather than help with accomodations in school. So we feel we have to be very selective about what we share with school and others outside the immediate family. 

 

We did share that we were going to have DS evaluated because there were some behavioral concerns in preschool (not bad enough for the teachers to push for an eval, but from their reaction I could tell they felt it was an appropriate step on our part) and I thought they ought to know that we were concerned as well and taking steps - though it was mostly stuff we were seeing at home, like explosions, some OCD-looking behaviour, tics and disordered sleep, and increasingly, reports that other children did not want to play with him, which made us decide to pursue the eval (NOT something that had the teachers concerned for some reason). I did mention to them that I suspected sensory issues (trying to reframe rather aggressive sensory seeking). Part of the eval was having a questionnaire filled in by the preschool teachers, which I gathered from them was a rather routine demand so proabably did not raise major red flags. I also mentioned that the psych thought DS' problems stemmed from the huge discrepancy between his clearly very advanced cognitive but possibly delayed socio-emotional development (an issue they are aware of) and that they were pursuing further testing. I did NOT share that they were evaluating for ASD.

 

At this point, though they talked of "some autistic traits" and "needing to watch his development", full-blown ASD is off the table. So we feel comfortable not sharing this concern at all with the school. We do not have the results in writing yet, but I am already planning what to share. I feel they ought to know the minor concerns like that he is "anxious", "highly sensitive", "extremely perceptive", that he is easily overwhelmed in social situations, that there are reasons to suspect, due to his low scores for receptive language, that he may have an auditory processing disorder, which makes him very sensitive to noise, and makes it hard for him to follow verbal directions, that he has problems with body awareness and sensory seeking. I feel comfortable withholding larger concerns -  I want them to think "poor sensitive, anxious kid" not "oh no, disturbed kid" at this point.



We also took the approach of wanting them to think "poor sensitive, anxious kid" for DS's Junior and Senior Kindergarten years - we absolutely framed things up that way and simply did not mention any of the behavioral concerns in hopes that it would not be an issue that he would show there. Fortunately, that seemed to serve DS well and the teachers made minor accommodations to allow him more control over sensory input and prepare him for changes; gradually we began expressing that he needed some support for increasing socialization on the playground and this was also generally dealt with positively. We disclosed a bit more this year as escalations increased at home and we needed to get to the bottom of it. His teacher does know about the Psychological assessment as he had to fill out many quesionnaires, but he doesn't know what diagnoses were on the table. He also knows he's missed a lot of time for "appointments", but he doesn't know the specifics of the appointments / what professionals they are with. Honestly, he probably thinks we're crazy parents dragging DS around to all these appointments,as DS holds it together so well at school... better that he think we're crazy parents than categorize DS as a "disturbed child" as he would likely do if he saw how he melts down and rages at home.

 



 

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Wow, a kid who's functional OUTSIDE the home and struggles INSIDE the home. I know the grass is always greener on the other side of the fence, but I wish my son's issues manifested that way. duck.gif

 

So... I have never had a choice about disclosing, and I don't feel that it has had negative consequences to talk about all the assessments and attempted treatments over the years. But if my son was functional at school, I think I'd apply the "ain't broke don't fix it" methodology for a few years at least. I wouldn't want a kid walking into a middle school without the counselor knowing he had a social interaction disorder. (Not that all middle schoolers don't seem to have one.) 



Trust me, I know how fortunate we are that DS is able to hold it together in public settings. I work with many children who can't (including many whose behaviors are far worse outside the home), and that was one of my biggest fears prior to DS starting school. I had actually thought through the entire plan for taking time off work and potentially homeschooling if necessary, as I was worried the school would be calling me daily about explosive behaviors. I still fear that eventually it may all become too much for him and he may not be able to hold it together at school at some point in time... but all I can do is keep working on skills and strategies to help him cope and hope it never comes to that. Although I will say that his explosive behaviors at home have had a huge impact on our family functioning, and the grass is really not particularly green here right now either...

 

 

It is good to hear of others' experiences with kids who are on the spectrum but not at all consistent in their symptomatic presentation. Thanks to everyone who has shared their input!

 

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#18 of 45 Old 04-17-2011, 07:34 PM
 
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I work with kids with Autism and my recommendation is always the same, if there is no need do not disclose. They are treated differently when there is a diagnosis - they will be let away with things because "they don't know any better" or the opposite - they failed a test well we better do an IEP for math then. A suggestion I would have so that you can keep an independent eye out is hire someone who knows what to look for to "volunteer" with a community group that your son is involved in or can get involved in to keep an eye out for trouble points with his peers or similar situations as to what is happening at home now. Then you will have a heads up if things start happening and can make a plan in advance of "teachers concerns" or try to head the problems off at the pass with some intervention that no one will know about.
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#19 of 45 Old 04-18-2011, 10:49 AM
 
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"Although I will say that his explosive behaviors at home have had a huge impact on our family functioning, and the grass is really not particularly green here right now either..."

 

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My special snowflake is homeschooled, and we have peace and harmony most days. Not that anybody who knows us outside the home will believe me. They probably think I keep him in a cage. 

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#20 of 45 Old 04-18-2011, 12:46 PM
 
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 Although I will say that his explosive behaviors at home have had a huge impact on our family functioning, and the grass is really not particularly green here right now either...

 


Can you tie his explosions at home with anything specific at school, find patterns? Because explosivness at home is a reason for accommodation at school. But you kinda got to figure out what to ask for. "Do something different" isn't really a request that school know what to do with, "no timed math test", however, is something they understand.

 

Also, what kind of sensory input does he get? For my DD, a good sensory diet is VERY helpful.

 

 


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#21 of 45 Old 04-18-2011, 06:14 PM - Thread Starter
 
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He discloses very little to us about school, but from the bits and pieces we have been able to put together most of the things he is anxious/upset about seem to be either social or sensory related. For example:

- crowding or being bumped on the bus (younger kids are required to sit 3 kids/seat)

- violent or aggressive play themes or talk on the playground

- misunderstanding/taking things literally (often associated with the violent themes, but not exclusively)

- other kids breaking the rules sometimes bothers him

- changes in routine (supply teachers, etc.) used to bother him a lot but don't seem to be as big a factor now (though I think they still impact)

 

Academics don't seem to be a trigger at this point. If anything, I think he is not challenged enough at school, but at the same time I'm not sure that asking for more challenging work is in his best interests either... IQ and achievement testing showed an unusual amount of variability, with some scores in the gifted range and others squarely in the average range; his area of weakness was the comprehension subtest of the WISC which requires social understanding... which I guess should not surprise me. Processing speed and memory were fine - both high average. No ADHD or CAPD. Achievement scores were almost all above the predicted level based on verbal IQ, despite the fact that he is in French Immersion (with no formal English instruction) and testing was done in English. French reading skills are well below English, but still above grade level expectations for immersion kids and primarily held back by lack of opportunity (kids are being required to read a certain # of texts at each level rather than starting at their current level and progressing from there), and lack of French vocabulary (which is appropriate for grade level in French Immersion but does hold him back from understanding more difficult French text).  So although there may be academic issues at some point in the future, at this point he doesn't express any concerns and is doing well academically.

 

Sensory diet wise, we have lots of opportunities for sensory-rich play at home (especially proprioceptive and vestibular input), and give lots of opportunities for sensory input that is calming for him too (quiet place to retreat to, stress balls, gum). At school I think he is sometimes overwhelmed by sensory input but will freeze rather than acting out. He is choosing to stay inside for recess whenever he can, which allows him a chance to retreat from unwanted sensory input... but also does not give him enough activity or social opportunities (although there is sometimes a small group of quiet, calm kids who stay in and that may be better for him socially then the playground anyway...).

 

Any thoughts on what accommodations you would ask for if we were going to move forward and share more details with the school in order to get more in place for him? (I have some thoughts on this, but would love input from others...).

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#22 of 45 Old 04-18-2011, 09:44 PM
 
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Can you either drive him back and forth or arrange for someone else to do so? The regular school bus is no place for kids with sensory issues (IMHO).

 

My DD qualified to ride the short bus, but we avoided that because she was mainstreamed and felt that it would be awkward for her socially, so I just drove her.

 

Having discussed this with both my neurotypical and my ASD (who rode the bus 1 time) I'd figure out a different way to get him back and forth.


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#23 of 45 Old 04-19-2011, 01:40 PM - Thread Starter
 
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I have rearranged my work schedule so that either DH or I can pick him up daily after school, which has been working well. Arranging to take him in the morning is more difficult - DH can't do it except in emergency circumstances,and there are days when it would not be possible for me to do it either (unless I quit work... which I have contemplated, but would have an enormous impact on our whole family so it would be a very very difficult decision to make). I have considered trying to arrange a way to do the drop off in the morning, but I actually worry that I'd have a harder time getting both kids to school if I did that. My younger DS also has anxiety about school, but climbs on the bus with no issues (I think because he doesn't have to separate from his brother at the same time as separating from a parent). Separating from me at the school seems harder for DS#2.

DS#1 has no problems separating from me if I drop him off at school, but if he is having a bad morning he would fight going to school much more if I were driving him. He has fought going on the bus a couple of days this year, but usually even if he is having a really bad morning he will climb on the bus with no issues (the issues are usually around getting his outdoor clothes on to go outside - but both DH and I are usually home at that time so we can spell each other off to preserve our patience).

 

For the last 2 years he took a taxi van to school (paid for by the school board because of the length of bus ride being too long for a kindergartener). Unfortunately they have rearranged bus routes so that they no longer have to provide taxi except for kids with special needs. Likely using the Aspergers dx we could get a taxi for him if we fought hard enough, but then DS#2 would have to ride the bus by himself... and I'm not sure DS#1 would want to take the taxi at this stage either, though I think it was much better for him as a kindergartener.

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#24 of 45 Old 04-20-2011, 04:22 PM - Thread Starter
 
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Well, the issue around disclosing diagnosis or not is off the table for now. The Psychiatrist who did the telepsych conference (video conference) today thinks the Psychologist's interpretations and diagnoses are incorrect.

 

Basically the Psychiatrist thinks we are crap parents who are not telling the truth about what is happening at home because that in her mind is the only explanation for why he would be so well behaved at school and not at home. Our local Pediatrician and mental health clinician who were also present for the telepsych tried to back us up that we were knowledgeable and consistent, and had put in place many very good strategies. Psychiatrist thinks we need someone to see what is actually going on in our home because our self-report cannot possibly be accurate. Mind you, she also thinks DS and both of us parents must have been lying when he responded that he was reading Harry Potter and she indicated that couldn't be true even after we stated that he was. Ummm, WTH?? Why would any of us lie about what he is reading? I guess she thinks we must be pathological liars in addition to being crap parents. The Pediatrician handed me her copy of the Psychology report I had given her so that I could read his standardized scores on reading skills to back up that in fact it could be true (Psychiatrist had this report, and had reviewed it... but I still had to prove it could be true by citing scores!).

 

After the teleconference ended the mental health clinician threw up her hands and said she could try to put through a referral for someone to observe in our home and help us develop parenting strategies, but she thinks it is a waste of time and money and they will wonder why they are even there. We will call her next week to let her know, but we will probably go ahead even though we think it will be useless. Best case scenario is that we really are bad parents and are such idiots that we don't even realize it - that truly is best case because it means we could have a relatively quick fix to the behavior issues, but I don't think it's true. Worst case scenario: we are decent parents who receive very little actual help from the process and lots of hassle from having these people in our house... but perhaps then we'll have more documentation to back us up in getting real professional help to get to the bottom of what is going on and get the correct treatment in place.

 

So frustrated! Uggghhh!!!

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#25 of 45 Old 04-20-2011, 10:12 PM
 
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I'm so sorry.

 

We went through a period where my DD would freak out at the beginning of the school (taking an hour or so to enter the building the help of the social worker, and then spending another hour or so in the social workers office) but eventually getting her day going and doing fine in all her classes from about 3rd period on. Then she would come home and completely freak out -- doing things like banging her head into a table as hard as she could until we could restrain her.

 

When we were in meetings with her teachers to figure out accommodations, most of her teachers were really surprised there were any problems at all. They didn't see the beginning of the day stuff, and she acted completely normal in their classes.

 

I really don't know what to tell you. One thing that helped was getting my DD into talk therapy. The talk therapy was helpful, and the therapist wrote a letter to the school. If you could schedule appointments for the times your son is most likely to be freaking out, it might help. It's helpful to have a *professional* witness the freakouts.


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#26 of 45 Old 04-21-2011, 02:27 PM
 
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I am very sorry. what a crap scenario.

 

DS has been evaluated for ASD and the result has been negative. however, some of the issues which have prompted us to seek the eval in the first place remain so the psych suggested sessions with an OT with a specialization in developmental counseling and she's been doing videos of us interacting with DS during games. I thought these might be a waste of time and money too (she picked games that DS was good at and he had a the full attention of a parent in a quiet room, so how could this tell us anything about he times we had problems?) but I was surprised how much I liked seeing us interact and having an outsider comment on it. Specifically as they were mostly nice comments, telling us we were interacting very well, being kind and consistent and mostly doing things just right IHO. And maybe the documentation will be useful for you.

 

DS, by now, seems to hold it together in school, but we still have explosions at home. On the whole, I much prefer it that way - I can change, and accomodate, and schools sometimes just can't.


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#27 of 45 Old 04-21-2011, 08:21 PM - Thread Starter
 
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Thanks for the support. Still processing everything... I had really hoped this appointment would help to clarify the true issues and/or diagnosis (didn't really care about the label as much as the underlying issues being correctly identified) and help us to get the best possible supports in place. Definitely not what happened. And I could have gotten that kind of snap judgement from anyone walking down the street without costing anyone a cent, and it would have been just as valid in my mind...

 

When I explained that he is quite rigid and on edge about following the rules at school, she actually said something along the lines of him needing to have more of that fear at home so he will behave. Yep, that's after we've disclosed family history of anxiety and his anxiety. Great, let's make a child MORE anxious because surely that will help him to learn to handle life's stressors more effectively. Seriously, when he's going through a particularly bad period of time even the mention of a reward or consequence escalates his anxiety and his behavior goes through the roof, he seems like he panics and cannot control his behavior in order to get the desired (or avoid the undesired) outcome. I don't agree that more fear will help him learn how to control his reactions.

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#28 of 45 Old 04-24-2011, 06:46 PM
 
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Do you have any way of working with a different psychiatrist as part of the interdisciplinary team?  If you aren't feeling that what you are getting from this person is helpful or supportive, it could hold back getting the right adaptations in place but most of all it just can make the family feel crappy.  We (the parents) went through something like this and it stressed the entire family (especially the socially sensitive siblings) a lot but more importantly, it held us back on getting the right treatment and adaptations.  Getting a better psychiatrist made a HUGE difference.


Busy keeping up with three children and an awful lot of chickens!

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#29 of 45 Old 04-26-2011, 08:10 PM - Thread Starter
 
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We will look into getting another psychiatrist's opinion, but I don't think it will be a straightforward process (and they would likely have access to the record from this consultation which I think would bias them). The more I think about it, the more I realize all the information that the psychiatrist did not bother to gather. She had made up her mind before she ever spoken with us based on very little information, and focused on a few (marginally relevant) topics for most of the appointment rather than gathering full background prior to making a conclusion. She based her reasoning that it must be a problem within the home on the fact that his current teacher reported no concerns with anxiety, behavior, or social skills. She did not bother to ask about previous teachers or observations of others in the school - his previous teachers were well aware of his anxiety and rigidity and his social difficulties, and although they had no behavior concerns they did recognize that his behavior changed when stressed. The counsellor who worked with him at school realized in just a few sessions that he has very high expectations for himself and is very rigid, and documented for the school to recognize that this may cause anxiety when things do not go as he thinks they should. The principal is also observant enough to have noticed his anxiety and sensory issues when he is surrounded by rough play on the playground, and she can see that he works hard to hold it together. But because his current teacher is not particularly perceptive and is focused on the kids who are disruptive, the judgement is made that it must be a problem in the home... Uggghh, I think the more we try to figure out how to help DS and what we need to put in place the more roadblocks we hit.

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#30 of 45 Old 04-27-2011, 08:37 AM
 
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Ugh!  I know this is only somewhat reassuring, but I suppose you have about six weeks of school left, roughly.  If you can't get some of this resolved through getting a second opinion from a new psychiatrist, maybe next year's teacher will be more observant and the psychiatrist can revisit this with new information.  Is your school small enough for you to have contact with the teacher for next year and discuss any accomodations that would reduce some of his stress, and maybe ask her to keep an eye out for certain behaviors?  Is the mental health clinician, a counsellor or a psychologist an option for you son having someone to discuss his feelings with or for giving you some concrete suggestions that would help?


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