DSis just found out her 12yo has Aspergers

[cheermom1]

And some parents have their heads planted deeply up their behinds. I know several who would rather have their children floundering than have them "labeled". Since we only have one side of this story I am willing to give the teachers the benefit of the doubt. Fortunately most parents know their kids need help and most teachers understand that they cannot stray into medical territory even when experience tells them something is very wrong.

I understand, in my case the doctor I originally went to was very supportive and told me that he was surprised it took me as long as it did to come to him..

this doc had been in our lives for over 10 years way before my kids were born and he knew us very well..anyway we started tests and things but it was the "specialists" that we had trouble with..they did one test and labeled him adhd and refused to do anything else..I KNEW that was not him and I tried to tell everyone that but they still wont listen..I think it is b/c I choose not to medicate (the reason is b/c ds refuses to take meds and it was more traumatizing than not to medicate)...

DS behavior is more of personal space issues and little corks and table manners, socially way behind as well as his hand writing, lets just say I even have hard time reading what he writes....

attention has nothing to with ds even his teachers tell me that they think he is not paying attention or off in la la land but when they ask him what they just said he can tell them word for word what they said...

so sometimes it is the docs that wont listen to the parents..all they want to do is put him on adhd meds and be done with him...he needs WAY more than that...

 

[BernardandMissBianca]

Sounds like neither needs to be teachers..and that some teachers just want the kids to sit like zombies ...

These particular teachers like kids that fit inside a certain box. My kids don't fit there.
DS13 tried his hardest to cram himself inside the box but DS8 could care less. If your box doesn't fit inside his dodecahedron then oh well. LOL

And some parents have their heads planted deeply up their behinds. I know several who would rather have their children floundering than have them "labeled". Since we only have one side of this story I am willing to give the teachers the benefit of the doubt. Fortunately most parents know their kids need help and most teachers understand that they cannot stray into medical territory even when experience tells them something is very wrong.

I'm not knocking testing and diagnosis. I do think there is a place for that for some kids.
However my point is questioning the legality of teachers administering tests without parental consent. And having a Dr circumvent the parent and sending a letter to the school with a diagnosis. That is against HIPAA rules, if I'm not mistaken.

I have had to deal with 3 years worth of teachers and a psychotic school psychologist trying to diagnose DS8 without going through proper channels, to the point where I was questioning my abilities as a parent. I did seek the advice of our family doctor and he saw no reason to test DS for anything.

 

[DisneyBamaFan]

...I'm not knocking testing and diagnosis. I do think there is a place for that for some kids.
However my point is questioning the legality of teachers administering tests without parental consent. And having a Dr circumvent the parent and sending a letter to the school with a diagnosis. That is against HIPPA rules, if I'm not mistaken...

This is my concern. I wouldn't have anything to do with a school or doctor who did such a thing, and I would hire a lawyer to determine if HIPAA laws were violated...

 

[BernardandMissBianca]

attention has nothing to with ds even his teachers tell me that they think he is not paying attention or off in la la land but when they ask him what they just said he can tell them word for word what they said...

This is soooo DS8! The principal has gotten on board with us and she sees it. She'll conference with him and she'll talk to him and gets the almost undetectable nod and off he goes. He's a sponge and soaks up everything, he just doesn't let you know it unless he wants you to.

 

[freckles and boo]

I have had to deal with 3 years worth of teachers and a psychotic school psychologist trying to diagnose DS8 without going through proper channels, to the point where I was questioning my abilities as a parent. I did seek the advice of our family doctor and he saw no reason to test DS for anything.

My child's teachers spend 34 hours a week with her. Her pediatrician sees her for 15 minutes every three months and is very old school. While I am sorry your experience was not a good one, I trust that the people who are with my daughter for hours almost every single day have her best interests at heart. They are all well-educated special educators. Our pediatrician is a whiz at keeping my daughters physically healthy but she has very little experience with ADHD and autism on a day to day basis. It was like pulling teeth to get her to sign the referral for a pediatric neurologist so we could get a good medical evaluation. Our school did a very thorough educational evaluation. BOTH are important.

 

[Mermaid02]

I just want to say that just because your sister has now seen this in writing- it doesn't change your niece. We chose to find out where our son's difficulties in social situations and behaviors came from so we could get him the help he needed. He has improved immensely since they made some changes at school- he's even going to "Fun Night" at school and having a great time. Socially he is starting to blossom!

 

[cheermom1]

This is soooo DS8! The principal has gotten on board with us and she sees it. She'll conference with him and she'll talk to him and gets the almost undetectable nod and off he goes. He's a sponge and soaks up everything, he just doesn't let you know it unless he wants you to.

YES!!! that is my son too...we have worked so hard on getting him where he needs to be b/c like I said I refuse to give him meds for something I do not believe he has and if they wont test for anything else how would they know anyway?? plus when he was tested for adhd they said he was border line and they couldn't come up with more...also b/c of his hand writing they let him use the computer on almost everything he has to write..that is part of his frustration he can't write and it makes him mad and just doesn;t want to try...all his teachers have told me he is very smart and could have skipped a grade but b/c he didn't show it they thought he wasn't as smart..then when they did the standardized tests he blew everyone out of the water so that is when the school started to get on board with me instead of the docs..WE came up with something that works for him and left the docs out!! The school councilor is there for him and he helps son out a lot, as a matter of fact he was the one that gave me info on the Aspbergers (sp)...

I do agree that in this case it sounds as though it looks like a law suit waiting to happen ..no one should go behind the parents back and do anything with their kids not cool!!

 

[BernardandMissBianca]

My child's teachers spend 34 hours a week with her. Her pediatrician sees her for 15 minutes every three months and is very old school. While I am sorry your experience was not a good one, I trust that the people who are with my daughter for hours almost every single day have her best interests at heart. They are all well-educated special educators. Our pediatrician is a whiz at keeping my daughters physically healthy but she has very little experience with ADHD and autism on a day to day basis. It was like pulling teeth to get her to sign the referral for a pediatric neurologist so we could get a good medical evaluation. Our school did a very thorough educational evaluation. BOTH are important.

We went the route of a pediatric neurologist too for DS13 when he was with the same 3rd grade teacher. He was diagnosed with a fine motor skills issue, which we knew about because DH had the same issue. So I know where you are coming from.
I definitely think that teachers are an integral part of a child's growth experience because they are with kids for so many hours a week. But I would like to see a balance within the teacher/parent power struggle.

And yes the school can do well with educational evaluations, we had one when we put DS13 in Sylvan for math. But I had to sign off on the school giving info to Sylvan and vice versa. The fact that schools are going around the parents and that Doctors are going around parents bothers me.

 

[BernardandMissBianca]

YES!!! that is my son too...we have worked so hard on getting him where he needs to be b/c like I said I refuse to give him meds for something I do not believe he has and if they wont test for anything else how would they know anyway?? plus when he was tested for adhd they said he was border line and they couldn't come up with more...also b/c of his hand writing they let him use the computer on almost everything he has to write..that is part of his frustration he can't write and it makes him mad and just doesn;t want to try...all his teachers have told me he is very smart and could have skipped a grade but b/c he didn't show it they thought he wasn't as smart..then when they did the standardized tests he blew everyone out of the water so that is when the school started to get on board with me instead of the docs..WE came up with something that works for him and left the docs out!! The school councilor is there for him and he helps son out a lot, as a matter of fact he was the one that gave me info on the Aspbergers (sp)...

Oh I could write this word for word. DS8 doesn't have Asperger's according to Doctors. But he can't process information right. When he writes, say spelling, he gets the word wrong but if he dictates it he spells every word right. When we can type, I'll type as he dictates which has made life so much easier.
DS8 has good handwriting but now we are in cursive which takes more time so he makes mistakes. DS13 has horrible hand writing so he types. He can type as fast as his brain moves so it works for him.
DH is the same way, drives me insane because every other word is "um". But his brain moves so fast his mouth can't catch up. So he has to reprocess and begin again.
I can't process information orally. I wish I had known that as a kid and been evaluated. I could have had a 504 that included written instruction.
DS8 is also very immature from a social stand point. I think part of that was because of his speech, poor kids tongue is huge and had issues with certain letters. And part of it is he just doesn't care, he's kind of a loner. If you are there in his space he's ok with it but he's just as ok with being alone doing his own thing.

 

[minkydog]

I also find it hard to believe that a doctor would send a diagnosis off to school w/o discussing the results with a parent first. As a parent, I certainly wouldn't let that slide.

I know its hard to believe, but its true. My sister was hysterical when she called me. I was the only person who had the nerve to tell her to her face that I thought her daughter was a little more different than usual. No one else(you'd have to know DSis. she is a very strong personality and people, including doctors and teachers, step carefully around her. Yep, she's one of *those* parents. ) And when I did float the possibility of Aspergers she shut me down.

And some parents have their heads planted deeply up their behinds. I know several who would rather have their children floundering than have them "labeled".

This. I know for a fact that teachers and counselors have tried to get this child tested for years and DSis wouldn't have any of it. She agreed to the ADHD diagnosis,and anxiety, because clearly this child is extremely anxious. DSis has been against labeling, which I understand. but in the meantime, this child has not received the real help that she has needed.

This is my concern. I wouldn't have anything to do with a school or doctor who did such a thing, and I would hire a lawyer to determine if HIPAA laws were violated...

You and me. Several things have been mishandled here and Idid suggest that she might want to talk to an attorney about it.

I just want to say that just because your sister has now seen this in writing- it doesn't change your niece. We chose to find out where our son's difficulties in social situations and behaviors came from so we could get him the help he needed.

EXactly what I'm hoping for. I hope that DSis can come to the acceptance that even though it hurts, it's not cancer. Aspergers can be managed. People with Aspergers can be successful, some of them very successful. But they need to right kind of support and socialization or it's a long hard uphill road.

 

[turkeymama]

Absolutely! My little girl is very polite. She is impulsive and sometimes asks inappropriate questions ("Excuse me. Do you have a baby in your belly?" ) but she is never mean-spirited or cruel. There are times when you have to try discern what is personality vs. development vs. what is coming to the surface because of the disability. Most verbal children with high-functioning autism or Asperger's should be able to use "please" and "thank you" and "you are welcome".

This is absolutely true and has been our experience with DS (almost 6). He is very respectful, but does ask inappropriate questions at time. He is very innocent about it. But the impulsivity can be a challenge, especially when you don't see it coming, which is often the case with DS.

OP, it is unfortunate that the dx is coming so late, but better late than never right? Now if only your Dsis will get on board, things can improve. Like others have said, sometimes it has to get worse before it gets better. Right now, we're looking at DS repeating kindy, and I'm thrilled. In fact, I'll go to the mattresses with anyone who says he shouldn't be held back. But I've been told that the typical parental response to this is denial and objections. My point is, sometimes we have to modify our expectations of our children to something that is a little more realistic and within their grasp. Otherwise, nothing gets done, no progress gets made, and everyone winds up frustrated. Your Dsis will come around hopefully, it may take some time to get over the initial shock of the "label".

 

[punkin]

I have had to deal with 3 years worth of teachers and a psychotic school psychologist trying to diagnose DS8 without going through proper channels, to the point where I was questioning my abilities as a parent. I did seek the advice of our family doctor and he saw no reason to test DS for anything.

Been there/done that!

Teachers have been trying to diagnose my DD(now 17) with ADHD throughout elementary school. Somehow when she finally changed schools for 6th grade she was magically cured. Oh did I mention that 16 out of 20 kids in her 5th grade class were on some sort of psycho-pharmaceutical?

She actually does have a neurological issue that our pediatrician and neurologist diagnosed but it was not and is not ADHD, which is the run-to diagnosis of most teachers and school psychologists.

I am disgusted that a doctor would do a run around a mother. If the teachers/medical professionals suspect neglect, there are agencies they can report parents to. Absent neglect, a parent has the final decision about a child's needs, and as a parent I know that I know my child best.

 

[Judy from Boise]

I am much more concerned that a child has not been recieving life changing early intervention, than I am a parent had their "rights" violated. Where is the outrage for this child! this is as much neglect as withholding any other thing necessary for the child to live a healthy life.

OP, I am glad you are there to help the mother accept this and move on.

 

[punkin]

I am much more concerned that a child has not been recieving life changing early intervention, than I am a parent had their "rights" violated. Where is the outrage for this child! this is as much neglect as withholding any other thing necessary for the child to live a healthy life.

OP, I am glad you are there to help the mother accept this and move on.

Then the doctor should have reported the mother for neglect, not released confidential information to third parties without her consent.