Re: Where to go from here? venting too.

[Guest guest]

I would suggest doing anything else; The University of Iowa has been doing this for a while now with 'us' it seems!

My 14 1/2 year old has been in and out of PMIC, Residentential treatment, has over 10 diagnosis, and is currently at the shelter after several hospitalizations for his issues / behaviors / etc; his report there was sooooo bad, it made him ineligible for waivers and services, so we had to go back to our dr. Dr. Wilharm (he does NOT like to diagnose 3 year olds though----by 5 he will)--------------

How about going to see a pediatrician? Dr. Sevening at St. Lukes Peds is whom we have seen....he referred us on. We like him, but you could see anyone, I just know we are NOT the first he has let know he has concerns about and referred on (I have one in my daycare right now which he referred on with Asperger's concerns (he never SAID that directly to us though)....just that he wanted us to see someone else, and we did. (he is very kind, caring, compassionate, and he is married with four or six children of his own (can't remember the exact number but his youngest is small!)----I believe he is 40, so he will be around to watch your child grow up.

If you are looking for an amazing therapist to help with things, and give you some INCREDIBLE insight, Call Cedar Centre in Cedar Rapids and ask to make an appointment with Sande Griffith; among numerous things as below, she IS a play therapist (meaning, she is amazing with your young aged child---she IS a mom herself, and just rocks!)tell her the following:

1. Ruthie Dolezal referred you (she is NOT taking new patients but she will see you if you tell her I referred you---be patient----but she DOES ROCK).

2. You really want her candid opinions on what she is thinking.

3. Without even telling you, she will change your child's life. No one told us ASPERGER'S; she taught our son feelings (we did not know he did not have any, etc.), everything

......she worked at Four Oaks for 10 years, St. Lukes for 3-5 years, and is now at Cedar Centre. She will be a life saver for your CHILD, and you....

Regardless of the diagnosis, the child needs good therapy, and that is a part / piece of the puzzle. So, I would start there at 3 1/2. And, you will be grateful you did see her; no matter of any 'offended' feelings you may ever have, listen to EVERYTHING she says, she is always right!!! It may not be what you want to hear that day, but think (pray, whatever) about it, and you will be sooooo glad you did. She is a wonderful, wonderful person; she is the best therapist we have had in 14 years with our three boys, so she is great!!!!

YOU CAN TRY GRANTWOOD TOO, but they typically STINK; I have heard of people moving to different counties, getting services through the AEA and then moving back / coming back (temporarily staying with someone in another county, etc)

Hope that helps. As for neurological stuff, I am certain it can never hurt. Good luck

Ruthie Dolezal

Aspergers Treatment From: ac1surf@...Date: Thu, 26 Jun 2008 10:59:06 -0700Subject: ( ) Where to go from here? venting too.

I have a question for all of the parents that belong to this support group.....did you take one diagnosis or did you press on and get another one? We took our ds to Iowa City in May and they sent back the report of what they thought he had. Basically, all it says is "possible Anxiety disorder". I have made an appointment with our general MD and ped to discuss this. Of course, I dont know what they will say. I just feel like there is something deeper with my ds. he is only 3 1/2 and everyone has their own opinion in our family. They say, "he is a boy, he is still little, wait until he is in kindergarten". Well, I dont want to wait. I want to nail this to the wall and get him help. I am a first time mother and he is my only child so I may be a little overexcited. But there is something in my gut telling me to pursue this. He does go to preschool and loves it. He does display some sensitivity tosome social settings. I try to prepare him for where we are going and things like that. But sometimes he still resist new social situations. I read up on AS and PDDs and he has some of the symptoms but I am not a DR.I am wondering if I should I try another clinic or see a ped neurologist?Thanks for listening and thank you in advance for any advice. I am so happy that I joined this group. God Bless you all!

[Guest guest]

PS PROBABLE / POSSIBLE is worthless, we HAVE learned that; we get sooooooo mad at them; spend all that money for THAT; it is worthless for services of ANY KIND. It would be better to say nothing that maybe!!!! That is the issue.

And, Anxiety at 3???? for later down the road, anxiety will help you better than aspergers....just does not necessarily help anything either way at school around here. Which district are you in? College comm. S_______ for helping us out; Linn-Marr and n, I have ONLY heard great so far; all schools around here are AWFUL for GrantWOod and providing services to our children even if they are severely retarded (seriously); have heard that even from parents of a child with 1/2 a brain (born that way); they fight and fight for every minute thing they get in services for even that child! SICK stuff, but good luck, .

Ruthie

Aspergers Treatment From: ac1surf@...Date: Thu, 26 Jun 2008 10:59:06 -0700Subject: ( ) Where to go from here? venting too.

I have a question for all of the parents that belong to this support group.....did you take one diagnosis or did you press on and get another one? We took our ds to Iowa City in May and they sent back the report of what they thought he had. Basically, all it says is "possible Anxiety disorder". I have made an appointment with our general MD and ped to discuss this. Of course, I dont know what they will say. I just feel like there is something deeper with my ds. he is only 3 1/2 and everyone has their own opinion in our family. They say, "he is a boy, he is still little, wait until he is in kindergarten". Well, I dont want to wait. I want to nail this to the wall and get him help. I am a first time mother and he is my only child so I may be a little overexcited. But there is something in my gut telling me to pursue this. He does go to preschool and loves it. He does display some sensitivity tosome social settings. I try to prepare him for where we are going and things like that. But sometimes he still resist new social situations. I read up on AS and PDDs and he has some of the symptoms but I am not a DR.I am wondering if I should I try another clinic or see a ped neurologist?Thanks for listening and thank you in advance for any advice. I am so happy that I joined this group. God Bless you all!

[Guest guest]

I was in a similar situation as you when my son was about the same age. He was initially considered as having Sensory Integration Dysfunction (took him to an Occupational Therapist for the diagnosis) but then I took him to the school district who evaluated him and said he had ADHD and possible PDD-NOS should be considered in the future. SID wasn't well recognized at that point and he didn't qualify for services under my insurance for him and I couldn't afford the OT treatments so we stopped going. It was $85/week and I had just started my first professional job. There was no way. I did watch what they did in his first OT treatments and tried to carry some of those things to our home and keep them up, which definitely helped.

He qualified for a pre-K program for the ADHD and speech (reciprocal language problems.) Once he started Kindergarten, he was considered ADHD only (another evaluation at school) and that's what we stuck with for a couple of years. In about the 3rd grade, I had evaluated outside of the school and the psychologist labeled him as possible generalized Anxiety disorder. We didn't get the actual Aspergers diagnosis until he was in the 6th grade.

I've always felt, since the first ADHD diagnosis, that something else was going on beyond ADHD. It just didn't ever "fit" with me. But I tried to leave the diagnoses behind and focus on the behaviors instead. I didn't have to go back and forth on what behaviors were causing problems because I knew hands down! We saw an ADHD expert for help w/ appropriate discipline and that helped tremendously. Yes, I don't agree w/ the ADHD diagnosis, but some of the behaviors are similar to Aspergers so what we learned was so helpful. I also started private counseling (covered on my insurance) in Kindergarten that lasted through the 3rd grade. I can't say enough how much it helped Dylan (social play therapy, one-on-one talking with an excellent psychologist) and me (counseling on the difficulties of raising a child w/ special needs and my own personal issues.) Big time help. Once Dylan stopped going, I continued

on for awhile.

So I'd say to focus on his behaviors, not so much the diagnosis. Learn all you can on your own. If have access to an EAP program or counseling, even if it's just an avenue to take care of yourself, capitalize on it!

( ) Where to go from here? venting too.

I have a question for all of the parents that belong to this support group.....did you take one diagnosis or did you press on and get another one? We took our ds to Iowa City in May and they sent back the report of what they thought he had. Basically, all it says is "possible Anxiety disorder". I have made an appointment with our general MD and ped to discuss this. Of course, I dont know what they will say. I just feel like there is something deeper with my ds. he is only 3 1/2 and everyone has their own opinion in our family. They say, "he is a boy, he is still little, wait until he is in kindergarten" . Well, I dont want to wait. I want to nail this to the wall and get him help. I am a first time mother and he is my only child so I may be a little overexcited. But there is something in my gut telling me to pursue this. He does go to preschool and loves it. He does display some sensitivity tosome social settings. I try to

prepare him for where we are going and things like that. But sometimes he still resist new social situations. I read up on AS and PDDs and he has some of the symptoms but I am not a DR.I am wondering if I should I try another clinic or see a ped neurologist?Thanks for listening and thank you in advance for any advice. I am so happy that I joined this group. God Bless you all!

[Guest guest]

people that know a lot about as or the autism spectrum

is a developmental neropsychologist that diagnosis

autism spectrum disorders most of the state

university's collages have doctors there for children

or look in the phone book.most testing last 4-8 hours

donot go to a mental health doctor because thats what

your going to get is a mental disorder, they know

nothing about autism and they do not treat autism i

have a doctor through mental health and he knows

nothing about my disorder i had to teach him and now

he understands.plus you can use your state

developmental centers they do diagnosising and other

services just look up iowa state developmental centers

or offices here in california they are call regional

centers i do not know what they are called there,---

andrea canas <ac1surf@...> wrote:

> I have a question for all of the parents that belong

> to this support group.....did you take one diagnosis

> or did you press on and get another one? We took our

> ds to Iowa City in May and they sent back the report

> of what they thought he had. Basically, all it says

> is " possible Anxiety disorder " .

>

> I have made an appointment with our general MD and

> ped to discuss this.

> Of course, I dont know what they will say. I just

> feel like there is something deeper with my ds. he

> is only 3 1/2 and everyone has their own opinion in

> our family. They say, " he is a boy, he is still

> little, wait until he is in kindergarten " . Well, I

> dont want to wait. I want to nail this to the wall

> and get him help.

>

> I am a first time mother and he is my only child so

> I may be a little overexcited. But there is

> something in my gut telling me to pursue this. He

> does go to preschool and loves it. He does display

> some sensitivity to

> some social settings. I try to prepare him for where

> we are going and things like that. But sometimes he

> still resist new social situations.

> I read up on AS and PDDs and he has some of the

> symptoms but I am not a DR.

>

> I am wondering if I should I try another clinic or

> see a ped neurologist?

> Thanks for listening and thank you in advance for

> any advice. I am so happy that I joined this group.

> God Bless you all!

>

>  

>

>

>

>

[Guest guest]

When our son was a toddler at his 'well-check' during routine

immunization with health nurse, they also do a screen for

development. Since his language was not on par with peers, we were

referred to a speech pathologist and began services through the

health unit. Later, we went to a pediatrican, who felt, he was too

young to diagnose, but felt he might have a PDD and referred us to a

hospital for Autism screening. This was at the age of 4 and the

doctor there was not quite sure and placed us on a list for thorough

screening within a larger hospital. We continued to have speech-

language services and son qualified to enter into kindergarten early

to take 2 years (this was enormously beneficial). His aide noticed

that our son also seemed to have motor skill delays and began seeing

an occupational therapist. By grade 3, still receiving services

through school, teacher came to me and asked whether or not I had

considered that my son might have Aspergers... It was SOOO weird

because I was on my way to the doctor for evaluation because my

reading had prompted me to wonder whether that might be his

prognosis... previously, he was referred to as " Swiss Cheese " by the

evaluators at the hospital for his gaps and strengths. During the

evaluation when in grade 3, he went to school at the hospital for 7

weeks and was seen daily by numerous persons. Finally, they decided

to give him a bunch of " ABCs " , including Central Auditory Processing

Disorder (CAPD), but were divided on whether he had an ASD and did

not give the diagnosis " at this time " . Today, he is 12 and our

pediatrician refers to our son as " Aspergers-like " although he does

not have a formal label. I suspect that like most parents, the

maternal instinct is correct and if you feel that there is more going

on with your son, then there likely is. You may not get a diagnosis

right away as physicians tend to want to wait, but you can still get

assistance with the symptoms in the meantime.

Good-luck!

>

> I have a question for all of the parents that belong to this

support group.....did you take one diagnosis or did you press on and

get another one? We took our ds to Iowa City in May and they sent

back the report of what they thought he had. Basically, all it says

is " possible Anxiety disorder " .

>

> I have made an appointment with our general MD and ped to discuss

this.

> Of course, I dont know what they will say. I just feel like there

is something deeper with my ds. he is only 3 1/2 and everyone has

their own opinion in our family. They say, " he is a boy, he is still

little, wait until he is in kindergarten " . Well, I dont want to wait.

I want to nail this to the wall and get him help.

>

> I am a first time mother and he is my only child so I may be a

little overexcited. But there is something in my gut telling me to

pursue this. He does go to preschool and loves it. He does display

some sensitivity to

> some social settings. I try to prepare him for where we are going

and things like that. But sometimes he still resist new social

situations.

> I read up on AS and PDDs and he has some of the symptoms but I am

not a DR.

>

> I am wondering if I should I try another clinic or see a ped

neurologist?

> Thanks for listening and thank you in advance for any advice. I am

so happy that I joined this group. God Bless you all!

>

>  

>

[Guest guest]

Have you tried your local regional center?

There is also an awesome tool that sort of grounded me from going back and forth on suspicion http://www.childbrain.com/pddassess.html. It isn't THE answer but might either help calm your worries or give you an idea on where he MAY be at on the spectrum. I did it when my son was 3.5 and he scored mild/mod on the spectrum a few months later I had him tested and got the same results.

As far as sensitivity that isn't the only indicator. My daughter didn't play on a playground until she was 2.5 and only watched people play before that. She hates her space invaded. She can't handle people writing with "squeaky" pencils and has had some outbursts in class for it. Now she isn't on the spectrum though. She just has some sensory issues that through some desensitizing and teaching her how to work around it it is actually not a huge deal anymore.

What things is he doing that have you deeply concerned?

Brittin, Proud Mother to

Rebekah (11-7-98)

Adam (1-16-03)

Ethan (2-16-06)

From: andrea canas <ac1surf@...>Subject: ( ) Where to go from here? venting too.Aspergers Treatment Date: Thursday, June 26, 2008, 10:59 AM

I have a question for all of the parents that belong to this support group.....did you take one diagnosis or did you press on and get another one? We took our ds to Iowa City in May and they sent back the report of what they thought he had. Basically, all it says is "possible Anxiety disorder". I have made an appointment with our general MD and ped to discuss this. Of course, I dont know what they will say. I just feel like there is something deeper with my ds. he is only 3 1/2 and everyone has their own opinion in our family. They say, "he is a boy, he is still little, wait until he is in kindergarten" . Well, I dont want to wait. I want to nail this to the wall and get him help. I am a first time mother and he is my only child so I may be a little overexcited. But there is something in my gut telling me to pursue this. He does go to preschool and loves it. He does display some sensitivity tosome social settings. I try to

prepare him for where we are going and things like that. But sometimes he still resist new social situations. I read up on AS and PDDs and he has some of the symptoms but I am not a DR.I am wondering if I should I try another clinic or see a ped neurologist?Thanks for listening and thank you in advance for any advice. I am so happy that I joined this group. God Bless you all!

[Guest guest]

I just went through another screening with my 2.5 year old through a psych from our local regional center. He spent 3 hours with us and despite seeing many positive things my son was displaying (some sharing, "look mom", etc) he analyzed the whole dsm with me for diagnosis and told me why he was hesitant here and there. THEN told me that because he is unsure and the autism symptoms he displays were mostly "mild" and oly a few "moderate" but there was enough there to give him soemthing he gave him pdd-nos. He said his language skills weren't "good" enough to be considered aspergers (his expressive language is on par w/ age but receptive is about a year behind) but that he displayed much of that oddity and awkwardness reflected from those with the diagnosis. He told me that if he still displays these symptoms at 5 or they are getting worse in comparison to

peers then to have him retested because he felt that there was a chance of straight autism diagnosis. I also took him to the MIND institute at 15 months old and they gave me this ridiculous list of diagnosis. I was floored and spoke with the woman who tested him and said you know if I combined all these disorders and wanted to make it one it would be autism. LOL She said well we dont' like to just diagnose right away. She gave him the anxiety disorder diagnosis too and the psych we saw recently laughed at that and said there is a depressive attitude and demeanor with a child that has that diagnosis. My son isnt' depressed and has never displaying those symptoms. This was coming from the woman that was on 60 minutes talking about how great they are at early testing. It seems like many of the hospitals are more reluctant to give a diagnosis.

I agree and disagree on the notion that diagnosis doesn't matter. I see everyone's point, however, there is a lot to be said for a diagnosis and the services your child can receive. Example my son would never have gotten in a fully funded ABA program w/out his diagnosis. It also helps to have a label especially one that really tells where your child is when you are in public and someone has questions or your child is saying something/doing something off the wallt hat may require an explanation. As my 5 year old (autism) is getting older I see how valuable the diagnosis is in navigating the school system, regional center, and society in general.

Brittin, Proud Mother to

Rebekah (11-7-98)

Adam (1-16-03)

Ethan (2-16-06)

From: tdhssp <johnvel@...>Subject: ( ) Re: Where to go from here? venting too. Date: Thursday, June 26, 2008, 12:36 PM

When our son was a toddler at his 'well-check' during routine immunization with health nurse, they also do a screen for development. Since his language was not on par with peers, we were referred to a speech pathologist and began services through the health unit. Later, we went to a pediatrican, who felt, he was too young to diagnose, but felt he might have a PDD and referred us to a hospital for Autism screening. This was at the age of 4 and the doctor there was not quite sure and placed us on a list for thorough screening within a larger hospital. We continued to have speech-language services and son qualified to enter into kindergarten early to take 2 years (this was enormously beneficial). His aide noticed that our son also seemed to have motor skill delays and began seeing an occupational therapist. By grade 3, still receiving services through school, teacher came to me and asked whether or not

I had considered that my son might have Aspergers... It was SOOO weird because I was on my way to the doctor for evaluation because my reading had prompted me to wonder whether that might be his prognosis... previously, he was referred to as "Swiss Cheese" by the evaluators at the hospital for his gaps and strengths. During the evaluation when in grade 3, he went to school at the hospital for 7 weeks and was seen daily by numerous persons. Finally, they decided to give him a bunch of "ABCs", including Central Auditory Processing Disorder (CAPD), but were divided on whether he had an ASD and did not give the diagnosis "at this time". Today, he is 12 and our pediatrician refers to our son as "Aspergers-like" although he does not have a formal label. I suspect that like most parents, the maternal instinct is correct and if you feel that there is more going on with your son, then there likely is. You

may not get a diagnosis right away as physicians tend to want to wait, but you can still get assistance with the symptoms in the meantime.Good-luck!>> I have a question for all of the parents that belong to this support group.....did you take one diagnosis or did you press on and get another one? We took our ds to Iowa City in May and they sent back the report of what they thought he had. Basically, all it says is "possible Anxiety disorder". > > I have made an appointment with our general MD and ped to discuss this. > Of course, I dont know what they will say. I just feel like there is something deeper with my ds. he is only 3 1/2 and everyone has their own opinion in our family. They say, "he is a boy,

he is still little, wait until he is in kindergarten" . Well, I dont want to wait. I want to nail this to the wall and get him help. > > I am a first time mother and he is my only child so I may be a little overexcited. But there is something in my gut telling me to pursue this. He does go to preschool and loves it. He does display some sensitivity to> some social settings. I try to prepare him for where we are going and things like that. But sometimes he still resist new social situations. > I read up on AS and PDDs and he has some of the symptoms but I am not a DR.> > I am wondering if I should I try another clinic or see a ped neurologist?> Thanks for listening and thank you in advance for any advice. I am so happy that I joined this group. God Bless you all!> > >

[Guest guest]

You probably won't get any better answers from a general MD but I would definately seek out at least a Pediatrician or maybe a child psychologist or even a psychiatrist who treats children. A mother's instinct is NEVER wrong and you are right to be concerned. Let us know what you find out.

Sue

From: andrea canas <ac1surf@...>Subject: ( ) Where to go from here? venting too.Aspergers Treatment Date: Thursday, June 26, 2008, 1:59 PM

I have a question for all of the parents that belong to this support group.....did you take one diagnosis or did you press on and get another one? We took our ds to Iowa City in May and they sent back the report of what they thought he had. Basically, all it says is "possible Anxiety disorder". I have made an appointment with our general MD and ped to discuss this. Of course, I dont know what they will say. I just feel like there is something deeper with my ds. he is only 3 1/2 and everyone has their own opinion in our family. They say, "he is a boy, he is still little, wait until he is in kindergarten" . Well, I dont want to wait. I want to nail this to the wall and get him help. I am a first time mother and he is my only child so I may be a little overexcited. But there is something in my gut telling me to pursue this. He does go to preschool and loves it. He does display some sensitivity tosome social settings. I try to

prepare him for where we are going and things like that. But sometimes he still resist new social situations. I read up on AS and PDDs and he has some of the symptoms but I am not a DR.I am wondering if I should I try another clinic or see a ped neurologist?Thanks for listening and thank you in advance for any advice. I am so happy that I joined this group. God Bless you all!

[Guest guest]

On Feb 22, 7:50pm, andrea canas wrote:

}

} I am a first time mother and he is my only child so I may be a little overe=

} xcited. But there is something in my gut telling me to pursue this. He does=

I will never cease to be grateful to the people who told me to listen to

my gut when Bam was little. When he was first evaluated, we were told

he barely squeaked into early intervention. He was very smart and could

be quite charming with people; he was diagnosed with a minor language processng

disorder. It was when he started to be seen by an experienced speech therapist

that finally someone else saw the things that had worried me.

So... listen to your gut. And ask questions and try to find the best

people to give you the answers. Whoever diagnoses your child should

be able to back up that diagnoses with convincing evidence.

Willa