Re: Intro-long :)

[Guest guest]

Welcome Pam! I'm new here too and everyone totally 'gets' what

you've been through. You have been through a LOT and it's good to

read that you seem to have found answers for your poor son and

yourself! You are an excellent mother for fighting this long battle

to this point!! Go Mom!!!

Jen

Lymie parents, 5yo Lymie/Aspie

On 10/23/2010 4:59 PM, Pamela wrote:

Hi everyone,

My name is Pam, I have two boys-D 11 and J 12. D was

diagnosed by two seperate doctors this past summer with

Aspergers. The possibility was brought to our attention

back in 2005, but it has been a struggle since then to

have anyone willing to listen to us or the few that agreed

with that dx. For 5 years of school he was labeled from

"just a bad kid", to emotionally disturbed..along with the

alphabet soup that never quite fit but was the current

staff's best guess-bipolar, adhd, ocd, odd, all the way to

schizophrenic, explosive personality disorder, and

antisocial personality disorder. UGH.

In the beginning, we were clueless, and trusted

"professionals" would give us a proper dx and we could

move on. Obviously that didn't happen lol. D struggled

through regular ed in first grade with no IEP or

accomodations at all, then entered a partial

hospitalization school for the next year and a half. We

were given assurance their Dr. there could dx him and get

these "behaviors" taken care of. The Dr. there DID agree

to consider Aspergers, and also sent him for an EEG. When

this came back abnormal, we were referred to a respectable

children's hospital for further testing. Unfortunately,

the Dr. there sat me down and lectured me on how he was

sick of parents trying to blame bad parenting and their

children's bad behaviors on brain abnormalities, and

dismissed me. For fear of physically hurting him lol I

walked away, and I think it was then that a part of me

gave up on anyone ever believing me, or in him.

Well....about 12 meds later (6 at the same time in the

end), with absolutely no improvement, but plenty of side

effects and at that point dx of bipolar, I joined a group

for parents of bipolar children and learned of diet and

supplementation helping some of these kids. We started the

Feingold diet, weaned him off of all meds, and began

supplements.

Within 2 weeks we got a call from the psychiatrist telling

us "whatever you're doing at home, keep doing it". His

behaviors had improved dramatically, and we had just

begun. By the time school started, they were talking

discharge. At this point I was also learning much more

about Aspergers and KNEW this was the correct dx. I

approached our psychologist about it, but he told me he

wasn't qualified to make that dx, though he did agree with

it. He suggested that I should try using techniques for

Aspergers on my own, which we did, and which basically got

us to...at least the most "normal" we had ever been. Days

were tolerable, I wasn't bruised or crying or having panic

attacks, etc.. He also began being able to participate in

sports, and other activities. Now, only the school setting

was a big problem.

In third grade he entered emotional support for 3rd and

4th grade, where he made great progress with good

understanding teachers. In 1 1/2 years he was suspended

several times, but went from 100% es, down to only 40

minutes a day in the es classroom. He had to transfer to

another school for 5th grade (these are all out of

district placements because my district has no es). Well,

it was a nightmare. Under a month into school our new

director moved him back to es 100% of the day, he was

abused emotionally and at times physically, kept in the

classroom with no opportunity to leave, even though his

classmates were, for 7 hours a day. He wasn't allowed to

speak to anyone, even his TSS, during recess time or

lunches. He didn't tell me about most of this for a couple

months, and the explanation I got from the school was that

he was choosing to behave this way and they would "fix"

him.

The next day I called an attorney, with whom we finally

filed due process, and got an independent eval. from a

neuropsych and a psychiatrist in the Philadelphia area.

Both of them diagnosed him with Asperger's, and also found

a learning disability and mental giftedness. Once again my

district wasn't prepared for him, so we were lucky to be

able to have him attend a private school in a high

functioning autism classroom where he is now. The progress

in under two months has been amazing, but even though I

"knew" for years this is what he has, actually having the

dx and knowing now has kind of thrown me into a whole new

world. It really felt like relief to have the dx. Of

course it's not what I WANT for my child, but neither is

bipolar or schizophrenia. At least now I feel like we can

move forward, but wish so much I could have gotten this

all going earlier.

So here I am....having known for 5 years that D has

Aspergers, but newly dealing with other people actually

accepting it and agreeing with me. It's amazing how some

people's tunes change so quickly, while others are still

so ignorant. Both irritate me honestly, if that makes

sense to anyone. D loves his new school, but now is also

getting therapy for the issues that the school brought

upon him last year.

Well, sorry for probably the longest intro ever lol. I've

only had time to read a few posts, but it is so comforting

already to see other people saying the things I have

thought, and some things I've felt guilty for feeling, and

to know that there are other people out there who just GET

IT. D is a handful, my life and lifestyle has changed

because of him, I still cry, and stress....but he is also

an absolutely unique and amazing person, one who I am very

very lucky to be able to say I am the mother of.

Pam

[Guest guest]

Somewhat along the same lines....our son was sick for almost a year and a half straight. It took me a good 6 months of keeping a daily journal etc to convince them that it had to be his adenoid. They finally agreed to take it out along with turbinate reduction. He is completely cured of this now.

These days you almost have to diagnose everything yourself unless its the common cold and then beat down someone's door to listen to you. We lost about ONE year on our Asperger's diagnosis because well we didn't know what we were doing, and no one at the pre-school he went to would listen to us when we would describe the issues he was obsviously having. They all pointed to Asperger's. In their defense I'm sure they had no idea either and they couldn't have known. But instead of being constructive they were defensive. I'm glad your finally got the correct diagnosis as now you will be able to attach the associated symptoms one by one. Everytime a deficit is minimized or cured your son will be freed up to help himself all that much more. And he can get better. He may need to practice certain things 100 times more than the others but he can learn. Asperger's is to social

behaviors what Dyslexia is to Reading.

I always say this but so much of an Aspies self limited behavior and self limited development is caused by sensory issues you need to immediately begin to seek help in identifiying his sensory issues. Usually its way more than one thing otherwise it wouldn't be called Sensory Integration Disorder with the key work being integration. Help on these things will empower him to do so much else.

OK I've got to go. My father in Law is repeatedly having to tell my son to stop accosting our toddler. Baby was his second word. Its not an obsession but he has this compulsion to hug babies. I think part of it is how he relieves his stress

From: Pamela <pgrosner@...>Subject: ( ) Intro-long Date: Saturday, October 23, 2010, 4:59 PM

Hi everyone,My name is Pam, I have two boys-D 11 and J 12. D was diagnosed by two seperate doctors this past summer with Aspergers. The possibility was brought to our attention back in 2005, but it has been a struggle since then to have anyone willing to listen to us or the few that agreed with that dx. For 5 years of school he was labeled from "just a bad kid", to emotionally disturbed..along with the alphabet soup that never quite fit but was the current staff's best guess-bipolar, adhd, ocd, odd, all the way to schizophrenic, explosive personality disorder, and antisocial personality disorder. UGH. In the beginning, we were clueless, and trusted "professionals" would give us a proper dx and we could move on. Obviously that didn't happen lol. D struggled through regular ed in first grade with no IEP or accomodations at all, then entered a partial hospitalization school for the next year and a half. We were given assurance their Dr.

there could dx him and get these "behaviors" taken care of. The Dr. there DID agree to consider Aspergers, and also sent him for an EEG. When this came back abnormal, we were referred to a respectable children's hospital for further testing. Unfortunately, the Dr. there sat me down and lectured me on how he was sick of parents trying to blame bad parenting and their children's bad behaviors on brain abnormalities, and dismissed me. For fear of physically hurting him lol I walked away, and I think it was then that a part of me gave up on anyone ever believing me, or in him. Well....about 12 meds later (6 at the same time in the end), with absolutely no improvement, but plenty of side effects and at that point dx of bipolar, I joined a group for parents of bipolar children and learned of diet and supplementation helping some of these kids. We started the Feingold diet, weaned him off of all meds, and began supplements. Within 2 weeks we got a call

from the psychiatrist telling us "whatever you're doing at home, keep doing it". His behaviors had improved dramatically, and we had just begun. By the time school started, they were talking discharge. At this point I was also learning much more about Aspergers and KNEW this was the correct dx. I approached our psychologist about it, but he told me he wasn't qualified to make that dx, though he did agree with it. He suggested that I should try using techniques for Aspergers on my own, which we did, and which basically got us to...at least the most "normal" we had ever been. Days were tolerable, I wasn't bruised or crying or having panic attacks, etc.. He also began being able to participate in sports, and other activities. Now, only the school setting was a big problem.In third grade he entered emotional support for 3rd and 4th grade, where he made great progress with good understanding teachers. In 1 1/2 years he was suspended several times, but

went from 100% es, down to only 40 minutes a day in the es classroom. He had to transfer to another school for 5th grade (these are all out of district placements because my district has no es). Well, it was a nightmare. Under a month into school our new director moved him back to es 100% of the day, he was abused emotionally and at times physically, kept in the classroom with no opportunity to leave, even though his classmates were, for 7 hours a day. He wasn't allowed to speak to anyone, even his TSS, during recess time or lunches. He didn't tell me about most of this for a couple months, and the explanation I got from the school was that he was choosing to behave this way and they would "fix" him.The next day I called an attorney, with whom we finally filed due process, and got an independent eval. from a neuropsych and a psychiatrist in the Philadelphia area. Both of them diagnosed him with Asperger's, and also found a learning disability and

mental giftedness. Once again my district wasn't prepared for him, so we were lucky to be able to have him attend a private school in a high functioning autism classroom where he is now. The progress in under two months has been amazing, but even though I "knew" for years this is what he has, actually having the dx and knowing now has kind of thrown me into a whole new world. It really felt like relief to have the dx. Of course it's not what I WANT for my child, but neither is bipolar or schizophrenia. At least now I feel like we can move forward, but wish so much I could have gotten this all going earlier. So here I am....having known for 5 years that D has Aspergers, but newly dealing with other people actually accepting it and agreeing with me. It's amazing how some people's tunes change so quickly, while others are still so ignorant. Both irritate me honestly, if that makes sense to anyone. D loves his new school, but now is also getting therapy

for the issues that the school brought upon him last year. Well, sorry for probably the longest intro ever lol. I've only had time to read a few posts, but it is so comforting already to see other people saying the things I have thought, and some things I've felt guilty for feeling, and to know that there are other people out there who just GET IT. D is a handful, my life and lifestyle has changed because of him, I still cry, and stress....but he is also an absolutely unique and amazing person, one who I am very very lucky to be able to say I am the mother of. Pam

[Guest guest]

Hi Pam, Welcome to this wonderful group. I hope we can all provide a little relief in your daily challenges with an ear to "listen" and a virtual shoulder to lean on. :-)ne

From: Pamela <pgrosner@...>Subject: ( ) Intro-long Date: Saturday, October 23, 2010, 4:59 PM

Hi everyone,My name is Pam, I have two boys-D 11 and J 12. D was diagnosed by two seperate doctors this past summer with Aspergers. The possibility was brought to our attention back in 2005, but it has been a struggle since then to have anyone willing to listen to us or the few that agreed with that dx. For 5 years of school he was labeled from "just a bad kid", to emotionally disturbed..along with the alphabet soup that never quite fit but was the current staff's best guess-bipolar, adhd, ocd, odd, all the way to schizophrenic, explosive personality disorder, and antisocial personality disorder. UGH. In the beginning, we were clueless, and trusted "professionals" would give us a proper dx and we could move on. Obviously that didn't happen lol. D struggled through regular ed in first grade with no IEP or accomodations at all, then entered a partial hospitalization school for the next year and a half. We were given assurance their Dr.

there could dx him and get these "behaviors" taken care of. The Dr. there DID agree to consider Aspergers, and also sent him for an EEG. When this came back abnormal, we were referred to a respectable children's hospital for further testing. Unfortunately, the Dr. there sat me down and lectured me on how he was sick of parents trying to blame bad parenting and their children's bad behaviors on brain abnormalities, and dismissed me. For fear of physically hurting him lol I walked away, and I think it was then that a part of me gave up on anyone ever believing me, or in him. Well....about 12 meds later (6 at the same time in the end), with absolutely no improvement, but plenty of side effects and at that point dx of bipolar, I joined a group for parents of bipolar children and learned of diet and supplementation helping some of these kids. We started the Feingold diet, weaned him off of all meds, and began supplements. Within 2 weeks we got a call

from the psychiatrist telling us "whatever you're doing at home, keep doing it". His behaviors had improved dramatically, and we had just begun. By the time school started, they were talking discharge. At this point I was also learning much more about Aspergers and KNEW this was the correct dx. I approached our psychologist about it, but he told me he wasn't qualified to make that dx, though he did agree with it. He suggested that I should try using techniques for Aspergers on my own, which we did, and which basically got us to...at least the most "normal" we had ever been. Days were tolerable, I wasn't bruised or crying or having panic attacks, etc.. He also began being able to participate in sports, and other activities. Now, only the school setting was a big problem.In third grade he entered emotional support for 3rd and 4th grade, where he made great progress with good understanding teachers. In 1 1/2 years he was suspended several times, but

went from 100% es, down to only 40 minutes a day in the es classroom. He had to transfer to another school for 5th grade (these are all out of district placements because my district has no es). Well, it was a nightmare. Under a month into school our new director moved him back to es 100% of the day, he was abused emotionally and at times physically, kept in the classroom with no opportunity to leave, even though his classmates were, for 7 hours a day. He wasn't allowed to speak to anyone, even his TSS, during recess time or lunches. He didn't tell me about most of this for a couple months, and the explanation I got from the school was that he was choosing to behave this way and they would "fix" him.The next day I called an attorney, with whom we finally filed due process, and got an independent eval. from a neuropsych and a psychiatrist in the Philadelphia area. Both of them diagnosed him with Asperger's, and also found a learning disability and

mental giftedness. Once again my district wasn't prepared for him, so we were lucky to be able to have him attend a private school in a high functioning autism classroom where he is now. The progress in under two months has been amazing, but even though I "knew" for years this is what he has, actually having the dx and knowing now has kind of thrown me into a whole new world. It really felt like relief to have the dx. Of course it's not what I WANT for my child, but neither is bipolar or schizophrenia. At least now I feel like we can move forward, but wish so much I could have gotten this all going earlier. So here I am....having known for 5 years that D has Aspergers, but newly dealing with other people actually accepting it and agreeing with me. It's amazing how some people's tunes change so quickly, while others are still so ignorant. Both irritate me honestly, if that makes sense to anyone. D loves his new school, but now is also getting therapy

for the issues that the school brought upon him last year. Well, sorry for probably the longest intro ever lol. I've only had time to read a few posts, but it is so comforting already to see other people saying the things I have thought, and some things I've felt guilty for feeling, and to know that there are other people out there who just GET IT. D is a handful, my life and lifestyle has changed because of him, I still cry, and stress....but he is also an absolutely unique and amazing person, one who I am very very lucky to be able to say I am the mother of. Pam