New Member

Posted October 14, 2002 · October 14, 2002

Vicci, I think that you still should go for the developmental pediatrician,

the pediatric neurologist, and behavioral specialist if that is available

to you. Write down ALL that you have told us. Give them all the

information. My bipolar grandchildren, well, can hold it together

for whoever is giving him an evaluation so that was a bit confusing to them.

But when I gave all the information to his new pscyhiatrist the first thing

she did was agree that he had early onset bipolar. Even though he holds it

together for you because you fit your world to work with him, the world

outside is not going to do this for him even now much less later on in life.

When your family and friends ask if he has autism, tell them the truth. You

are not positive but he may be PDD and he needs more evaluation. It sounds

like you are doing a great job all ready with him but I might caution that

he is going to need to learn that there is going to be changes in his life.

I have tried not to let Evan's life get into a routine and when I get into a

routine and then change it, he lets me know. BUT then I have not been

living with a child who gets so out of control constantly either. I

probably would be doing as much to keep his life routine as I could if Evan

was screaming out of control about it.

Oh, and welcome to the wonderful world of confusing and confused

specialists.

Betty

grandma and guardian to

- 11 yo-- Bipolar/ADHD on Depakote, Adderall, Omega 3's

Evan - 8 yo nonverbal autism on 3 mg Risperdal

- 6 - Bipolar/ADHD/RAD/PTSD on Tegretol, Adderall Omega 3's

mother to , their mom - Bipolar/ADHD on Topamax

wife to Bob too many meds to remember

Posted October 14, 2002 · October 14, 2002

-

Vicci,

I have an 8 y.o son with a few behaviors similar to -the

fights with kids, hyperactivity, etc. He is pddnos. He is also ADHD,

and his teacher current thinks the ADHD is the major problem. That

can be very hard when you have a kid that doesnt fit neatly into a

diagnosis. We tried adderall, wasnt that great. Some people have

luck with other meds. It sounds like he needs a shadow or aide in

the classroom, this could help tremendously with the " behaviors " I

like the idea of social stories, I think theyre great. Perhaps you

could have diagnosed by someone that has a lot of familiarity

with pdd. By the way aspergers and pddnos are the two ASDs that are

likely to look like ADHD.

Thea

-- In autism@y..., " capajravelle "

<capajravelle@y...> wrote:

> Hello,

>

> My name is Vicci and I'm mom to , 7 y/o, and this is our

story.

>

> has always been a difficult and tempermental child and a

> bit " odd " in his behavior. But the pediatrician would never

believe

> me because can also be very " normal " . At five days old,

> started doing his gentle head bumping (still does occasionally),

> never really hurting himself,he seems to enjoy it. As an infant,

> didn't coo, jibberjabber, or babble. Instead, he waited

until

> he was 15 months old and just spoke, like a much older child of 3

or

> 4 years. He waited until 10 months to sit up and then just walked

at

> 12 months. He has hit every " milestone " within an acceptable

amount

> of time, but these are not the things that worried me. At about 18

> months, I had to begin teaching how to play because he

didn't

> have a clue. He would sit and look at his toys and wail. Before

this

> age, he was content to be left alone, preferred it actually.

Often,

> from infancy and well into toddlerhood, he would just tune out and

> stare off into space (still does, but not as much). He never

smiled

> unless we really, really worked for it. When he was 2 years 5

months,

> I put him in preschool, thinking it would help his socialization

> skills. Wrong! He didn't speak for two months after starting and

> screamed bloody murder every time I dropped him off. We didn't

send

> him back.

>

> as a toddler was a nightmare. He tantrumed constantly, he

> limited his food choices to a select few (still only eats these

> foods), he was impossible to console when upset, he preferred his

> blanket to us for comfort, he responded to absolutely zero in the

> discipline department, most of the time he just didn't respond at

all

> when we spoke to him. He was stiff to hold and startled easily. We

> thought he might have a hearing problem, he didn't. He didn't play

> with other kids, barely noticed them. He would not participate in

any

> group activities (still a challenge). He would not potty train

until

> almost five and still didn't care if he peed/pooed his pants at

six.

> Thankfully, the we finally figured out what was setting off the

> tantrums. Usually it was something sensory; clothes, food,

> temperature, change of routine. What made it all so hard was that

he

> was, and is, a very verbal child. He could repeat commercials

> verbatim and did so constantly, much to our annoyance. Sometimes

he

> wouldn't understand what was being said to him and he'd get a

blank

> look and echo back at us, but that wasn't too often. He started

> reciting commercials at about 3 and still does it, except now, he

has

> added video scenes to his repetoire. I know lots of kids do this,

but

> constantly? And do they do it in answer to questions or requests?

>

> Then he started kindregarten. He wouldn't participate in group

> activities, he was picking at everthing, he was getting into

fights

> with other children, the head bumping turned into head punching,

the

> tantrums came back in force. He started spinning for hours again

(he

> previously did this from 2 1/2 to 4)and didn't want to go out and

> play anymore. He was 5 1/2 and running our lives. We couldn't take

> him anywhere because we never knew what would happen. Still, the

> pediatrician said, wait and see on the behavior stuff, but maybe

we

> should do something about the food issues. Whoop de do. The

doctors

> didn't seem to care and I didn't know what else to do so, we

figured

> we just had to live with him.

>

> Over the summer, he didn't really calm much, and when first grade

> started, I was concerned. The notes started coming the second week

of

> school. was humming, was standing on his chair, he

was

> laying on the floor, he was picking at everything, he wouldn't

follow

> directions, he needed requests repeated often, he was easily

> distracted, etc...They thought he had ADHD, I just didn't know.

>

> I called the pediatrician, he told me to have the school test him

for

> LD. This was in October last year--he was finally tested in March

of

> this year. No LD,possible ADHD-combined type. The pediatrician

tested

> his eyes and hearing. He sent us to an opthamologist and to the

Child

> Development Unit for evaluatiion. is slightly near-sighted

(no

> glasses yet)and the CDU said definite ADHD/ODD. We saw a social

> worker and she didn't even look for anything else. She sent us to

a

> psychologist. The psychologist said yes ADHD, maybe ODD, maybe

> autism, maybe asperger's. He sent me to a psychiatrist for

medication

> for the ADHD and then we would " see what's left " .

>

> had two visits with the psychologist after starting

Adderall

> XR, one for 25 minutes and one for 45 minutes. Then he pronounced

> that was fine, no problems here. I was flabbergasted. Of

> course was fine; the guy gave him matchbox cars and legos

to

> play with while he spoke with him ( ONLY plays with cars,

all

> other toys are accessories to cars). I'd bet my life never

> once looked up at him or made eye contact during those two visits.

He

> barely makes eye contact with us.

>

> The Adderall XR was horrible. It was somewhat helpful for

in

> school, allowing him to better maintain his attention, stopped the

> noises,and gave him a desire to participate. But, when it wore

off,

> look out! He was a nightmare from day one on the stuff.

Emotionally

> he was all over the place, his tantrums were getting out of

control,

> and he was sleeping even less than usual. I kept him on it for 28

> days because the psychiatrist said it needed time to work (stupid,

I

> know that now). The longer was on the Adderall, the more

> agitated he was becoming as it wore off. He started head punching

> again, spinning, avoiding others, and the tantrums.... I stopped

> giving it to him at this point.

>

> Back to the psychiatrist on October 3. He wanted to give me Paxil

for

> 's compulsive behaviors, he wanted to give me something else

> (don't know what)to help sleep at night, and he wanted to

> change the Adderall XR to regular Adderall so that it would wear

off

> before he got home from school. This so we wouldn't have to " deal "

> with him as he came off the Adderall (how this was suppossed to

help,

> I don't know, he was just as bad when I didn't give him the

Adderall

> XR). I refused all of the medications. I don't want to give my kid

> one drug to counteract the side effects of another and I wasn't

sure

> about giving him Paxil. Here is where I asked the doc about all of

> 's other " issues " , especially the sensory stuff. I also

wanted

> to know (and still do want to know)why some days is

perfectly

> average and other days he is so off the wall he worries me.

>

> At this point, the doc is exasperated with me, I can tell. He said

> that, originally, I brought to him because of ADHD symptoms

> and now, I'm plopping all of this on him. I told him that it was

the

> school that pushed the ADHD, I had been trying to get someone,

anyone

> to listen to me about all this other stuff for years. I asked him

> about OT for 's sensory problems, he agreed that might be a

> good idea and then he asks me if anyone ever mentioned Asperger's.

He

> asks a few more questions and listens some more and then just

dumps

> PDD on me. Just like that he whips out PDD, I was shocked,

floored,

> numb, and...expecting it. The psychologist afterall said the same

> thing when I plopped it all in his lap. I just figured the

> psychiatrist might be more knowledgable/helpful with the behavior

> stuff. I didn't think he was goig to change 's diagnosis.

> (again, by the way. He was up to ADHD/ODD and Sensory Integration

> Dysfunction from the psychologist)

>

> The psychiatrist sounded so sure, but it is just a preliminary

> diagnosis. I say preliminary because he is unwilling to commit to

the

> diagnosis. He tells me he wants to see a developmental

> pediatrician, a pediatric neurologist, and a behavioral

specialist.

> He mentioned something about having bloodwork done, too. He told

me

> to contact Medicaid and get " in the system " for wraparound

> services because the private insurance is going to run out. He

said

> find out what paperwork I needed and he'd provide it, but he

wouldn't

> give me anything definite for 's school. He told me all of

this

> so fast and then just rushed us out of the office, our 45 minutes

was

> up.

>

> I am seriously confused. I don't really think this guy believed

me, I

> know the school sure doesn't. It felt like he just wanted to get

rid

> of me. When I called him the following Monday for a script for the

> school to evaluate him by an OT, he couldn't even remember why. He

> told me to write him a letter detailing the conversation and he

would

> be happy to mail me the script. Now, I am seriously beginning to

> doubt myself.

>

> The one thing I did do after I got over my shock was get some

books

> from the library and book stores. I had actually starting reading

> some of them after the psychologist mentioned autism way back in

> August. These books have helped me learn about my son and what PDD

is

> and what I, as a parent can do to help. I found numerous

descriptions

> of my son in those books, just not always to the same degree of

> impairment. I had already begun to do some of the stuff

recommended

> in those books, so maybe that is why the psychologist didn't see

any

> problems with . After seeing the psychiatrist and (sort of)

> getting the diagnosis confirmed,I got in touch with a member of my

> synagogue who has a PDD-NOS child and asked for advice. I

explained

> 's symptoms/behaviors and they agreed that it is probably

PDD,

> just like their child, but I'm still not sure. We did decide to

just

> go for it and treat him as if the diagnosis was IT, rather than

> waiting until his February 5 appointment with the developmental

> pediatrician for confirmation. We figured it couldn't hurt and,

with

> what we'd already done, some small change was evident.

>

> has never transitioned or adapted to new situations easily

or

> well. It took a brick wall to fall on us for us to realize that we

> had to adapt to him. (I'll admit, I was not only shocked, but

scared

> after the psychiatrist said PDD) Since then, we have majorly

> restructured our lives to accomadate , and things have been

> better. We stick to his desired routines and keep everything the

same

> as much as possible. We warn him well in advance if change is to

> occur. We maintain the same set schedule for him every week with

> minimal alterations. I made a picture board schedule for him for

his

> daily activities and showed him how to use it (he loves it). I

> enlisted the help of his teacher to keep his routine at school as

> regular as possible, to warn him of fieldtrips and substitutes

well

> in advance, and to announce activity changes in class before they

> move on. She has also given him preferential seating so as to

control

> his outburts. I'm using social stories to influence his behavior

when

> we go out and to help him cope with change. We don't use long

> sentences with him anymore. We explain things in as few words as

> possible, one word orders work best.

>

> seems more secure and less anxious; he doesn't seem to be

> afraid of everything as much. He still engages in his compulsive

> behaviors, he still makes funny noises and movements, he still

> tantrums, he still hates clothes and any kind of change, but

things

> ARE getting better. Incidents of self-stimulating behavior (head

> punching, spinning, rocking) are fewer and he is tuning out a

little

> less because we keep him busy. Other than the continuing problems

at

> school, he seems almost like any other average 7 y/o. The changes

in

> him are small, but for us, definitely noticable.

>

> Now, I'm wondering if I should still take him to all those

doctors.

> Will they believe me? When was at his absolute worst, no

one

> did, so why would they now when he can mostly behave?

actually

> does quite well in a new environment for the fist few visits. He

is

> very bright; he can memorize a new video after one viewing. He

just

> isn't able to sit still or not be noisy in school (or anywhere

else

> familiar).

>

> I really don't want to put him on the stimulants again, that was

an

> awful experience for both and us, but I need to do

something

> about his attention and behavior at school. I can deal with him at

> home and when we go out. Anyone have any suggestions? I have been

> into other group rooms, but none just for those with an autistic

> child and the advice, though often good, really doesn't address my

or

> my son's needs directly.

>

> I want to know what is going on with him. I'm tired of comments

from

> friends, family, and strangers. I have actually been asked if my

son

> is autistic and what do I say? If he is, it is mild, I suppose,

but

> that doesn't make things any easier. I really don't know what to

do.

> I'm beginning to question my own judgement. What really

constitutes a

> problem behavior and what is " normal " ? Am I simply an overreactive

> mother? What am I doing to my son?

>

> Thanks for the ear,

>

> Vicci

Posted October 14, 2002 · October 14, 2002

Vicci:

As I read your post I read what I went through with my son to a tee......My

son age 7 sounds exactly like your son......with all the same issues

and concerns. was diagnosed with pdd-nos last April.

When he started Grade K, the teacher was the noticed something was not right

(I also thought there was something different) and then the ball started. My

ped referred me to a Developmental Unit and a team gave him the diagnosis

after their eval......now here is the clincher.....a few months later when I

took him to a psychologist for out patient therapy he saw something

different.....he said my son was too high functioning and disagreed with the

pdd-nos diagnosis. He said my son had a delay in speech with

dyslexia......now I really had a headache and was confused. He also had " odd "

behaviors but was told he was just being a kid " sniffing people " " licking

walls " ..????????

I was so stuck on finding the right diagnosis, I used every reason.... " How

can I research, if I dont know what to research? " ....etc.......

How can somedays he be described as a " model student " ...in school and then

the next day be so unappropriate in his actions......I felt as though I was

going crazy.........I needed a way to handle it all, peoples comments, their

opinions, doctors.... etc.....

So here is what I did and it works for me.....I forgot the label

totally.....it is on paper at school etc,......BUT I have agreed with myself

to treat the DEFICITS and not try to treat a diagnosis that he fits in

somedays and others not at all......

So he needed speech and we gave him speech therapy, he had OT issues and we

provided therapy for that. He has learning deficits and he is in a learning

support program at school....Socially he is enrolled in Karate, enjoying

peers in the same interests, he sees a psycologist for behavior

issues...Obsession with germs etc.......

WE are treating him as a child with special needs not a diagnosis....because

one thing I have found out is having the same diagnosis as another child does

not mean their needs are the same.......

I researched and researched and the bottom line to me was not the diagnosis

but the individual needs for my son!!!!!!!!

This is a informative group and as a new member you will find

support........we know how you feel

Debbie in Pa/ pdd-nos age7

theaghoss wrote:

> -

> Vicci,

> I have an 8 y.o son with a few behaviors similar to -the

> fights with kids, hyperactivity, etc. He is pddnos. He is also ADHD,

> and his teacher current thinks the ADHD is the major problem. That

> can be very hard when you have a kid that doesnt fit neatly into a

> diagnosis. We tried adderall, wasnt that great. Some people have

> luck with other meds. It sounds like he needs a shadow or aide in

> the classroom, this could help tremendously with the " behaviors " I

> like the idea of social stories, I think theyre great. Perhaps you

> could have diagnosed by someone that has a lot of familiarity

> with pdd. By the way aspergers and pddnos are the two ASDs that are

> likely to look like ADHD.

>

> Thea

>

> -- In autism@y..., " capajravelle "

> <capajravelle@y...> wrote:

> > Hello,

> >

> > My name is Vicci and I'm mom to , 7 y/o, and this is our

> story.

> >

> > has always been a difficult and tempermental child and a

> > bit " odd " in his behavior. But the pediatrician would never

> believe

> > me because can also be very " normal " . At five days old,

>

> > started doing his gentle head bumping (still does occasionally),

> > never really hurting himself,he seems to enjoy it. As an infant,

> > didn't coo, jibberjabber, or babble. Instead, he waited

> until

> > he was 15 months old and just spoke, like a much older child of 3

> or

> > 4 years. He waited until 10 months to sit up and then just walked

> at

> > 12 months. He has hit every " milestone " within an acceptable

> amount

> > of time, but these are not the things that worried me. At about 18

> > months, I had to begin teaching how to play because he

> didn't

> > have a clue. He would sit and look at his toys and wail. Before

> this

> > age, he was content to be left alone, preferred it actually.

> Often,

> > from infancy and well into toddlerhood, he would just tune out and

> > stare off into space (still does, but not as much). He never

> smiled

> > unless we really, really worked for it. When he was 2 years 5

> months,

> > I put him in preschool, thinking it would help his socialization

> > skills. Wrong! He didn't speak for two months after starting and

> > screamed bloody murder every time I dropped him off. We didn't

> send

> > him back.

> >

> > as a toddler was a nightmare. He tantrumed constantly, he

> > limited his food choices to a select few (still only eats these

> > foods), he was impossible to console when upset, he preferred his

> > blanket to us for comfort, he responded to absolutely zero in the

> > discipline department, most of the time he just didn't respond at

> all

> > when we spoke to him. He was stiff to hold and startled easily. We

> > thought he might have a hearing problem, he didn't. He didn't play

> > with other kids, barely noticed them. He would not participate in

> any

> > group activities (still a challenge). He would not potty train

> until

> > almost five and still didn't care if he peed/pooed his pants at

> six.

> > Thankfully, the we finally figured out what was setting off the

> > tantrums. Usually it was something sensory; clothes, food,

> > temperature, change of routine. What made it all so hard was that

> he

> > was, and is, a very verbal child. He could repeat commercials

> > verbatim and did so constantly, much to our annoyance. Sometimes

> he

> > wouldn't understand what was being said to him and he'd get a

> blank

> > look and echo back at us, but that wasn't too often. He started

> > reciting commercials at about 3 and still does it, except now, he

> has

> > added video scenes to his repetoire. I know lots of kids do this,

> but

> > constantly? And do they do it in answer to questions or requests?

> >

> > Then he started kindregarten. He wouldn't participate in group

> > activities, he was picking at everthing, he was getting into

> fights

> > with other children, the head bumping turned into head punching,

> the

> > tantrums came back in force. He started spinning for hours again

> (he

> > previously did this from 2 1/2 to 4)and didn't want to go out and

> > play anymore. He was 5 1/2 and running our lives. We couldn't take

> > him anywhere because we never knew what would happen. Still, the

> > pediatrician said, wait and see on the behavior stuff, but maybe

> we

> > should do something about the food issues. Whoop de do. The

> doctors

> > didn't seem to care and I didn't know what else to do so, we

> figured

> > we just had to live with him.

> >

> > Over the summer, he didn't really calm much, and when first grade

> > started, I was concerned. The notes started coming the second week

> of

> > school. was humming, was standing on his chair, he

> was

> > laying on the floor, he was picking at everything, he wouldn't

> follow

> > directions, he needed requests repeated often, he was easily

> > distracted, etc...They thought he had ADHD, I just didn't know.

> >

> > I called the pediatrician, he told me to have the school test him

> for

> > LD. This was in October last year--he was finally tested in March

> of

> > this year. No LD,possible ADHD-combined type. The pediatrician

> tested

> > his eyes and hearing. He sent us to an opthamologist and to the

> Child

> > Development Unit for evaluatiion. is slightly near-sighted

> (no

> > glasses yet)and the CDU said definite ADHD/ODD. We saw a social

> > worker and she didn't even look for anything else. She sent us to

> a

> > psychologist. The psychologist said yes ADHD, maybe ODD, maybe

> > autism, maybe asperger's. He sent me to a psychiatrist for

> medication

> > for the ADHD and then we would " see what's left " .

> >

> > had two visits with the psychologist after starting

> Adderall

> > XR, one for 25 minutes and one for 45 minutes. Then he pronounced

> > that was fine, no problems here. I was flabbergasted. Of

> > course was fine; the guy gave him matchbox cars and legos

> to

> > play with while he spoke with him ( ONLY plays with cars,

> all

> > other toys are accessories to cars). I'd bet my life never

> > once looked up at him or made eye contact during those two visits.

> He

> > barely makes eye contact with us.

> >

> > The Adderall XR was horrible. It was somewhat helpful for

> in

> > school, allowing him to better maintain his attention, stopped the

> > noises,and gave him a desire to participate. But, when it wore

> off,

> > look out! He was a nightmare from day one on the stuff.

> Emotionally

> > he was all over the place, his tantrums were getting out of

> control,

> > and he was sleeping even less than usual. I kept him on it for 28

> > days because the psychiatrist said it needed time to work (stupid,

> I

> > know that now). The longer was on the Adderall, the more

> > agitated he was becoming as it wore off. He started head punching

> > again, spinning, avoiding others, and the tantrums.... I stopped

> > giving it to him at this point.

> >

> > Back to the psychiatrist on October 3. He wanted to give me Paxil

> for

> > 's compulsive behaviors, he wanted to give me something else

> > (don't know what)to help sleep at night, and he wanted to

> > change the Adderall XR to regular Adderall so that it would wear

> off

> > before he got home from school. This so we wouldn't have to " deal "

> > with him as he came off the Adderall (how this was suppossed to

> help,

> > I don't know, he was just as bad when I didn't give him the

> Adderall

> > XR). I refused all of the medications. I don't want to give my kid

> > one drug to counteract the side effects of another and I wasn't

> sure

> > about giving him Paxil. Here is where I asked the doc about all of

> > 's other " issues " , especially the sensory stuff. I also

> wanted

> > to know (and still do want to know)why some days is

> perfectly

> > average and other days he is so off the wall he worries me.

> >

> > At this point, the doc is exasperated with me, I can tell. He said

> > that, originally, I brought to him because of ADHD symptoms

> > and now, I'm plopping all of this on him. I told him that it was

> the

> > school that pushed the ADHD, I had been trying to get someone,

> anyone

> > to listen to me about all this other stuff for years. I asked him

> > about OT for 's sensory problems, he agreed that might be a

> > good idea and then he asks me if anyone ever mentioned Asperger's.

> He

> > asks a few more questions and listens some more and then just

> dumps

> > PDD on me. Just like that he whips out PDD, I was shocked,

> floored,

> > numb, and...expecting it. The psychologist afterall said the same

> > thing when I plopped it all in his lap. I just figured the

> > psychiatrist might be more knowledgable/helpful with the behavior

> > stuff. I didn't think he was goig to change 's diagnosis.

> > (again, by the way. He was up to ADHD/ODD and Sensory Integration

> > Dysfunction from the psychologist)

> >

> > The psychiatrist sounded so sure, but it is just a preliminary

> > diagnosis. I say preliminary because he is unwilling to commit to

> the

> > diagnosis. He tells me he wants to see a developmental

> > pediatrician, a pediatric neurologist, and a behavioral

> specialist.

> > He mentioned something about having bloodwork done, too. He told

> me

> > to contact Medicaid and get " in the system " for wraparound

> > services because the private insurance is going to run out. He

> said

> > find out what paperwork I needed and he'd provide it, but he

> wouldn't

> > give me anything definite for 's school. He told me all of

> this

> > so fast and then just rushed us out of the office, our 45 minutes

> was

> > up.

> >

> > I am seriously confused. I don't really think this guy believed

> me, I

> > know the school sure doesn't. It felt like he just wanted to get

> rid

> > of me. When I called him the following Monday for a script for the

> > school to evaluate him by an OT, he couldn't even remember why. He

> > told me to write him a letter detailing the conversation and he

> would

> > be happy to mail me the script. Now, I am seriously beginning to

> > doubt myself.

> >

> > The one thing I did do after I got over my shock was get some

> books

> > from the library and book stores. I had actually starting reading

> > some of them after the psychologist mentioned autism way back in

> > August. These books have helped me learn about my son and what PDD

> is

> > and what I, as a parent can do to help. I found numerous

> descriptions

> > of my son in those books, just not always to the same degree of

> > impairment. I had already begun to do some of the stuff

> recommended

> > in those books, so maybe that is why the psychologist didn't see

> any

> > problems with . After seeing the psychiatrist and (sort of)

> > getting the diagnosis confirmed,I got in touch with a member of my

> > synagogue who has a PDD-NOS child and asked for advice. I

> explained

> > 's symptoms/behaviors and they agreed that it is probably

> PDD,

> > just like their child, but I'm still not sure. We did decide to

> just

> > go for it and treat him as if the diagnosis was IT, rather than

> > waiting until his February 5 appointment with the developmental

> > pediatrician for confirmation. We figured it couldn't hurt and,

> with

> > what we'd already done, some small change was evident.

> >

> > has never transitioned or adapted to new situations easily

> or

> > well. It took a brick wall to fall on us for us to realize that we

> > had to adapt to him. (I'll admit, I was not only shocked, but

> scared

> > after the psychiatrist said PDD) Since then, we have majorly

> > restructured our lives to accomadate , and things have been

> > better. We stick to his desired routines and keep everything the

> same

> > as much as possible. We warn him well in advance if change is to

> > occur. We maintain the same set schedule for him every week with

> > minimal alterations. I made a picture board schedule for him for

> his

> > daily activities and showed him how to use it (he loves it). I

> > enlisted the help of his teacher to keep his routine at school as

> > regular as possible, to warn him of fieldtrips and substitutes

> well

> > in advance, and to announce activity changes in class before they

> > move on. She has also given him preferential seating so as to

> control

> > his outburts. I'm using social stories to influence his behavior

> when

> > we go out and to help him cope with change. We don't use long

> > sentences with him anymore. We explain things in as few words as

> > possible, one word orders work best.

> >

> > seems more secure and less anxious; he doesn't seem to be

> > afraid of everything as much. He still engages in his compulsive

> > behaviors, he still makes funny noises and movements, he still

> > tantrums, he still hates clothes and any kind of change, but

> things

> > ARE getting better. Incidents of self-stimulating behavior (head

> > punching, spinning, rocking) are fewer and he is tuning out a

> little

> > less because we keep him busy. Other than the continuing problems

> at

> > school, he seems almost like any other average 7 y/o. The changes

> in

> > him are small, but for us, definitely noticable.

> >

> > Now, I'm wondering if I should still take him to all those

> doctors.

> > Will they believe me? When was at his absolute worst, no

> one

> > did, so why would they now when he can mostly behave?

> actually

> > does quite well in a new environment for the fist few visits. He

> is

> > very bright; he can memorize a new video after one viewing. He

> just

> > isn't able to sit still or not be noisy in school (or anywhere

> else

> > familiar).

> >

> > I really don't want to put him on the stimulants again, that was

> an

> > awful experience for both and us, but I need to do

> something

> > about his attention and behavior at school. I can deal with him at

> > home and when we go out. Anyone have any suggestions? I have been

> > into other group rooms, but none just for those with an autistic

> > child and the advice, though often good, really doesn't address my

> or

> > my son's needs directly.

> >

> > I want to know what is going on with him. I'm tired of comments

> from

> > friends, family, and strangers. I have actually been asked if my

> son

> > is autistic and what do I say? If he is, it is mild, I suppose,

> but

> > that doesn't make things any easier. I really don't know what to

> do.

> > I'm beginning to question my own judgement. What really

> constitutes a

> > problem behavior and what is " normal " ? Am I simply an overreactive

> > mother? What am I doing to my son?

> >

> > Thanks for the ear,

> >

> > Vicci

>

Posted October 14, 2002 · October 14, 2002

Vicci,

I havent read the replies to your post, but look forward to it...

You described alot of our story and worries, and symptoms etc...

still doesnt talk alot he is getting alot better, and what he

does say are usually " canned phrases " he gets from tv mostly

commercials...he is comprehending some now which is great...but

nothing like other 3 yr olds..

But I also was getting the run around... no one listened to our

worries all along.. and now he is doing alot better, I figured no one

would listen either... Was I over reacting... I knew what had/was

going on with him wasnt " normal " but was it abnormal?? I finally got

a diagnosis of moderate to severe autism and hte prognosis of him

never living alone, always needing special ed and group homes... And

from what I read on here and other autism lists, he is mild... not

moderate to severe... I was so hoping for him just getting over this,

whatever it was, that had gone undiagnosed, and getting to regular

kindergarten just a year late. He is only 3, but his birthday is in

mid Aug. and we would have to start at age 4... so I had planned

keeping him out a year anyway. All my hopes were dashed... his

behavior is awful, but in other ways he has gotten better.. He was

always jabbering as if having a conversation with us. We made jokes

that we were going to have to learn his language because he didnt

want to learn ours LOL....

He was diagnosed first with severe language delay, at age 2 1/2 our

pediatrician wouldnt listen to our concerns that he had started

talking and forgot everything soon after learning it...starting

around age 1- 1/2.... Then during his therapies the speech therapists

said there was more going on than frustration from not being able to

communicate, and that he needed behavioral therapy... They sent a OT

and she diagnosed possible sensory integration disorder... and gave

us brushing therapy, and it is like calming the savage beast at

times... when I combined all his issues together I knew there was

more going on, but no one listened... We finally had to pay for

behavioral therapy ourselves insurance wouldnt cover it and early

intervention wouldnt provide it. This therapist never looked at

and said, there was nothing wrong with him WE needed parenting

classes on how to deal with him... we had 2 kids... they are like

night and day theirselves, its not like we expected him to be exactly

like his sisters... But she refused to make a diagnosis because he

was too young. but said it was probably ODD... yep... sounds pretty

accurate, BUT how does that explain his sensory issues and learning

to talk then forgetting how to... he wasnt refusing to talk, he

couldnt comprehend things that he used to be able to...

We had even more doctors appts, and some of them even flatly

telling me, that they were not going to medicate him, implying that

is what I was pushing for.... NO I was pushing to find out what was

wrong and how to treat it... I couldnt imagine his 1 hour of speech

therapy a week was all there was to be done for all of his

problems... and everyone was saying I was already doing all that

could be done no matter what the diagnosis was... which I didnt

believe... I dont know... I go from his absolute worst when he

cannot communicate, screams for HOURS with no way on earth to console

him. To now when he can communicate some, he can reason a little, his

impulsiveness is down a little... and then we get the worst diagnosis

we could have ever imagined...

I was so discouraged and wanted and still do, want to stop going to

all these doctors and therapists and just work with him ourselves...

I was told there was nothing wrong with him after all... ( yeah

right) we do know the diagnosis he has now if off, this psychiatrist

didnt even look at him other than try to get in his face was soon as

we walked in the door, and of course wouldnt lookat him... I

wouldnt have either...He sat him in teh floor with cars and like you

said his favorite toy.. and the only thing he did notice was that

would not react to him. but stopped dead in his tracks for a

train whistle off in teh distance... and that he accidently hit his

head a few times and didnt acknowledge it...He scored him as having

symptoms I KNOW I said I NEVER see.... then prescribed him

risperdal... I wasnt sure if I wanted to medicate anyway.... and

wasnt sure of the diagnosis anyway... I still wanted to quit all

these dead end office visits.. but was/am afraid I wont be doing him

any favors by not pursuing it...

You know what sets off... waiting rooms.... crowds... and I

have to take him into crowded waiting rooms 2-3 times a week! haha I

wonder if I didnt have to drag him out of his routine and school and

into these disturbing places that he might have better results.. and

everyone have better days?? I know your confusion...

Posted November 2, 2002 · November 2, 2002

You need some type of diagnosis for the appropriate services. The

complete evaluation should weigh a lot.It sounds like the school

needs to deal with this acting out as well. What type of preschool

is he in. Maybe he needs a specialized setting, I guess you need the

evals for that. Its good that he is bright, and improving in speech.

Thea

> Hi - my son Tyler is almost 4 and I believe has many of the signs

of

> autism. He bangs his head (sometimes severely and has literally

put

> dents in our walls). He has no patience, cries or becomes very

> aggressive for any reason and has just started acting out at

school

> with his teachers. He seems to be lost in his own world at times

and

> doesn't interact with other children well. I have brought him to

few

> doctors, but there has been no definite diagnosis and am now in

the

> process of trying have a complete eval done on him. He also has

> absolutley no desire to learn to potty train and will also smear

his

> dirty diaper on the wall if we don't catch him in time. My husband

> and I are very frustrated and troubled with him. On a good note -

he

> seems to be bright, is talking better, but it seems like the

> negatives outway the postives! Any thoughts or suggestions would

be

> appreciated!

Posted November 2, 2002 · November 2, 2002

You need some type of diagnosis for the appropriate services. The

complete evaluation should weigh a lot.It sounds like the school

needs to deal with this acting out as well. What type of preschool

is he in. Maybe he needs a specialized setting, I guess you need the

evals for that. Its good that he is bright, and improving in speech.

Thea

> Hi - my son Tyler is almost 4 and I believe has many of the signs

of

> autism. He bangs his head (sometimes severely and has literally

put

> dents in our walls). He has no patience, cries or becomes very

> aggressive for any reason and has just started acting out at

school

> with his teachers. He seems to be lost in his own world at times

and

> doesn't interact with other children well. I have brought him to

few

> doctors, but there has been no definite diagnosis and am now in

the

> process of trying have a complete eval done on him. He also has

> absolutley no desire to learn to potty train and will also smear

his

> dirty diaper on the wall if we don't catch him in time. My husband

> and I are very frustrated and troubled with him. On a good note -

he

> seems to be bright, is talking better, but it seems like the

> negatives outway the postives! Any thoughts or suggestions would

be

> appreciated!

Posted November 2, 2002 · November 2, 2002

He is in a pre-school where there are " model " children (he is NOT in

that category) and also w/other kids who may have similiar issues. He

seems to have the most problems. Is okay when he is dropped off and

during the class time, but when it is time to pick him up, he kicks

the teachers, cries and will bang his head??? Had a hard time with

him this morning at grocery store - didn't get a cupcake and started

crying and banging his head on the metal carriage! I was mortified!

Is he going to be like this his whole life? What is usually the long

term prognosis for Autism? Again, he has not been diagnosed with it,

but after reading alot of the posted stories, I'm seeing many

similarities.

> > Hi - my son Tyler is almost 4 and I believe has many of the signs

> of

> > autism. He bangs his head (sometimes severely and has literally

> put

> > dents in our walls). He has no patience, cries or becomes very

> > aggressive for any reason and has just started acting out at

> school

> > with his teachers. He seems to be lost in his own world at times

> and

> > doesn't interact with other children well. I have brought him to

> few

> > doctors, but there has been no definite diagnosis and am now in

> the

> > process of trying have a complete eval done on him. He also has

> > absolutley no desire to learn to potty train and will also smear

> his

> > dirty diaper on the wall if we don't catch him in time. My

husband

> > and I are very frustrated and troubled with him. On a good note -

> he

> > seems to be bright, is talking better, but it seems like the

> > negatives outway the postives! Any thoughts or suggestions would

> be

> > appreciated!

Posted November 6, 2002 · November 6, 2002

New member

Hi. I am also a new

member to the group. I am a registered dietitian currently working privately

with a surgeon in my area. He has been performing gastric bypass for about 18

months now. The pts are referred to me and I see them before the surgery and after.

I also attend the monthly support group meeting conducted by the physician and

a nurse who actually had the surgery almost 3 years ago. It has been a real

enjoyment and a learning experience. I look forward to communicating with other

professionals involved in this. I have many questions!! Especially for those

who may do this on a private basis. Amy Clifford, RD

Posted December 6, 2002 · December 6, 2002

Welcome to ! I've been a member for a while now, almost 3 years, I

think, and have learned tons and tons of valuable information that has

resulted in my son getting the best kind of care possible. I have an

incredible pediatrician, (my husband has actually turned down job promotions

because we'd have to move out of the area because there is no way we'd even

consider the horror of finding another one!) and a great immunologist and a

great neurologist....we have been very very lucky. Our first general

practise doctor made a lot of mistakes with Kody, that I do believe resulted

in some irreversable damage to my son but I try not to dwell on that or I'd

be a very mad woman all the time! LOL My son is 6 years old, he has

Di Syndrome, Hypogammaglobulinemia, Epilepsy, Asthma, and CAPD and VID

Please feel free to visit my website for parents of children with multiple

special needs:

www.geocities.com/schmidtzoo/SNAK.index.html

-- New Member

Thanks for the welcome Ursula. Sorry to hear you had a death in your family.

That is especially difficult around the holidays.

Here is our story to date:

Noelle was born a seemingly healthy 9lbs 1 oz on January 9, 1997. She had

very few health problems(outside of your average cold) until she was 6 mos

old. She developed her first ear infection at that time. Approximately 4 wks

after that she came down with another ear infection, but I couldn't get her

fever to come down. We took her to the pediatrician who diagnosed the ear

infection and possible UTI and placed her on a broad spectrum antibiotic.

Noelle pretty much slept the rest of the night. When we woke up the next

morning Noelle was seizing and unresponsive. We rushed her to the Children's

Hospital where she was diagnosed with pneumococcal meningitis. Noelle

suffered extensive brain damage from the meningitis and is severely

developmentally delayed, has speech apraxia,has left hemiplegic cp, and a

seizure disorder. Noelle was fairly healthy following the bout with

meningitis(except for some sinus infections) up until the past year. While

my

husband was laid up in bed, (after being run over by a car while riding his

bike)Noelle came down with several unusual & serious infections. She was

hospitalized several times over the course of a couple of months for these.

After her last hospitalization for a sinusitis/cellulitis(which her

pediatrician failed to diagnose)her pediatrician decided to do an immune

study after she had recovered sufficiently. Her (now former) pediatrician

told me her test results came back fine, but I obtained a copy and was

concerned with her subclass numbers so I decided to get a second opinion.

That pediatrician put in a call to an immunologist and when the immunologist

heard the test results he wanted us in his office within the week. After

running several rounds of tests, we were told that Noelle has a C-2

compliment deficiency. The only treatment is hospitalization & plasma

transfusions when she gets sick(which neither my husband or myself can do

because we don't match Noelle) and hyper-immunization. She is also high risk

for Lupus when she gets older. We are now waiting for the test results on

our

other 5 children. Since it is hereditary there is a 25% chance of them

having

the condition and a 50% chance they carry the gene. I am hoping to have

those

results tomorrow. We are only the third family in our area to have ever been

diagnosed with this deficiency, and from what I have gathered the first

family was 25 yrs ago. On one hand I was upset about the diagnosis, but on

the other it was a relief to finally have some answers. Noelle is finally

being cared for by a team of doctors I have confidence in and trust. (which

has been an issue for some time)

That is our story for the most part. Sorry it was such a long one! I am

hoping to meet some families who understand what we are going through...ups

AND downs.

mom to Noelle 5 1/2yrs(C-2 compliment deficiency, l-hemi, seizures,

speech apraxia, MR, allergies) Caitlin 13 1/2 yrs nda, Brogan 12 yrs

asthma/allergies, 11yrs asthma/allergies, 8yrs nda,

Christian 3 yrs nda

Posted December 27, 2002 · December 27, 2002

Please share your experiences working with this support group. Our surgeons

do not want the dietitians at the support group, so we don't see anyone

except the failures that get admitted to the hospital for rescue. This

probably gives us a skewed view of the overall statistics and is very

distressing.

Thanks, Kendra

> New member

>

> Hi. I am also a new member to the group. I am a registered dietitian

> currently working privately with a surgeon in my area. He has been

> performing gastric bypass for about 18 months now. The pts are referred to

> me and I see them before the surgery and after. I also attend the monthly

> support group meeting conducted by the physician and a nurse who actually

> had the surgery almost 3 years ago. It has been a real enjoyment and a

> learning experience. I look forward to communicating with other

> professionals involved in this. I have many questions!! Especially for

> those who may do this on a private basis. Amy Clifford, RD

>

Posted December 30, 2002 · December 30, 2002

Our program surgeons here in the Dallas area have an RD in their practice as

well as the ones in the hospital. All of them attend the post-op support

group monthly meetings and the patients find this very helpful as they are

able to ask questions that the surgeons do not know the answers to. The RD

employed by the surgeons' office has had the RNY herself so she is very

empathetic and the patients also find this extremely comforting. Why do the

doc not want the RD's there? Do their pts not see an RD at all unless

something goes wrong? How sad and irresponsible but I know other practices

that do that also....ours is on the cutting edge in my opinion.

Beverly Millison MS RD/LD CDE

Clinical Coordinator, MNT

Medical Center of ville

972-219-5113 - office

972-420-1891 - fax

Beverly.Millison@...