Re: New here - hi everyone

[Guest guest]

Hi

I don't have any experience with Utah. But I have experience with a grandson

that acts just like your son. My stepdaughter has had great results with using

sign language to develop verbal skills. It takes some of the flustration out. I

use it with my daughter too on occassion. There is a great company called

Signing Times Kids which runs a show on PBS stations including the digital ones.

I believe their website is www.SigningTimesKids.org and then there is

www.starfall.com which my daughters school utilizes. Starfall has verbal and

sign language activities for kids, parents and teachers.

Let me know if this helps any.

M.

stefanieroch@... wrote:

My name is and my almost three year old son (Ashton) was

diagnosed

with PDD-NOS a few days ago. The psychologist said he is pretty sure that it

will actually be Asperger's, but since his language is delayed right now he

can't officially have a diagnosis of Asperger's. He doesn't fit PDD either

since his language is pretty good, so he's falling somewhere between the two.

We'll just wait and see what happens I guess. We're pretty stunned right now so

it'll take a while to figure things out anyway.

My husband and I also have a 5 year old daughter who has a rare chromosomal

abnormality, so we've been dealing with different issues for quite a while now.

It's actually pretty strange - the abnormality she has puts her at a high

risk of having an Autism Spectrum Disorder, but she doesn't have one. She has

Autistic tendencies, but no official diagnosis - not even PDD. The only reason

we even had our son evaluated for ASD is because we knew what to look for

because of my daughter's condition. So it's all related in some bizarre kind of

way, even though we know for sure that our son doesn't have our daughter's

condition.

We're feeling pretty overwhelmed and upset right now, but I'm guessing that's

pretty typical. We have two children, both with disabilities, and aren't

capable of having any more. We attempted in-vitro fertilization twice earlier

this year and were unsuccessful both times, and we can't conceive naturally

because I lost both fallopian tubes due to freak issues (I conceived both of my

children with only one fallopian tube, then lost it last year - it's a long

story). Now we're wondering if it was a blessing that the IVF wasn't successful

since our son's psychologist told us that we have a much higher than average

chance of having another child with an ASD since we already have one.

I know I gave TMI in my introduction, but I just have a few questions and am

hoping my background will help with the answers. First, how common is it for

families to have more than one child with an ASD? Is there anyone out there

who has attempted IVF after having one child with an ASD? Were you counseled

against it by your psychologist/doctor/geneticist/anyone official?

Also, I need help! I love my children more than I thought it was possible to

love anyone, and I am so glad I have them. But I am feeling so overwhelmed!

I have no patience and feel like I spend so much time upset with them. I'll

focus on my son's issues since this is an ASD support group. He has tantrums

ALL THE TIME - he will scream and scream and scream and they can last an hour

or more. He is also so stubborn. If he doesn't want to do something, he

simply won't do it. He will also come up and talk to me - he'll babble for

minutes on end, and I have no idea what he's trying to say to me. He gets so

frustrated and so do I. He wants me to understand, but I just don't know what

he's

saying. He is starting preschool in about a week and a half, but his

preschool teacher doesn't know about his diagnosis yet so I may have to contact

the

district to see if a different placement would be better for him (he was

diagnosed after his preschool teacher was assigned).

Also - is anyone out there from Utah? Are there any resources out there

besides preschool? We're not new to the IEP process since our daughter has one,

and my son's IEP is in a couple weeks. I'd like to know if there are any

typical accommodations for ASD kids and what specific things I should ask for. I

feel very unprepared for this IEP since I know so little about his diagnosis,

so I plan to read a lot in the next little while. Are there any books out

there that are more helpful than others? Are there any to stay away from? I've

heard Tony Attwood's book is pretty good - is this true?

Done with my super long letter. Thanks for the vent and thanks for reading

if you got this far! If anyone has any suggestions or help, I'd love them!

[Guest guest]

stefanieroch@... wrote: My name is and my almost three

year old son (Ashton) was diagnosed

with PDD-NOS a few days ago. The psychologist said he is pretty sure that it

will actually be Asperger's, but since his language is delayed right now he

can't officially have a diagnosis of Asperger's. He doesn't fit PDD either

since his language is pretty good, so he's falling somewhere between the two.

We'll just wait and see what happens I guess. We're pretty stunned right now so

it'll take a while to figure things out anyway.

My husband and I also have a 5 year old daughter who has a rare chromosomal

abnormality, so we've been dealing with different issues for quite a while now.

It's actually pretty strange - the abnormality she has puts her at a high

risk of having an Autism Spectrum Disorder, but she doesn't have one. She has

Autistic tendencies, but no official diagnosis - not even PDD. The only reason

we even had our son evaluated for ASD is because we knew what to look for

because of my daughter's condition. So it's all related in some bizarre kind of

way, even though we know for sure that our son doesn't have our daughter's

condition.

We're feeling pretty overwhelmed and upset right now, but I'm guessing that's

pretty typical. We have two children, both with disabilities, and aren't

capable of having any more. We attempted in-vitro fertilization twice earlier

this year and were unsuccessful both times, and we can't conceive naturally

because I lost both fallopian tubes due to freak issues (I conceived both of my

children with only one fallopian tube, then lost it last year - it's a long

story). Now we're wondering if it was a blessing that the IVF wasn't successful

since our son's psychologist told us that we have a much higher than average

chance of having another child with an ASD since we already have one.

I know I gave TMI in my introduction, but I just have a few questions and am

hoping my background will help with the answers. First, how common is it for

families to have more than one child with an ASD? Is there anyone out there

who has attempted IVF after having one child with an ASD? Were you counseled

against it by your psychologist/doctor/geneticist/anyone official?

Also, I need help! I love my children more than I thought it was possible to

love anyone, and I am so glad I have them. But I am feeling so overwhelmed!

I have no patience and feel like I spend so much time upset with them. I'll

focus on my son's issues since this is an ASD support group. He has tantrums

ALL THE TIME - he will scream and scream and scream and they can last an hour

or more. He is also so stubborn. If he doesn't want to do something, he

simply won't do it. He will also come up and talk to me - he'll babble for

minutes on end, and I have no idea what he's trying to say to me. He gets so

frustrated and so do I. He wants me to understand, but I just don't know what

he's

saying. He is starting preschool in about a week and a half, but his

preschool teacher doesn't know about his diagnosis yet so I may have to contact

the

district to see if a different placement would be better for him (he was

diagnosed after his preschool teacher was assigned).

Also - is anyone out there from Utah? Are there any resources out there

besides preschool? We're not new to the IEP process since our daughter has one,

and my son's IEP is in a couple weeks. I'd like to know if there are any

typical accommodations for ASD kids and what specific things I should ask for. I

feel very unprepared for this IEP since I know so little about his diagnosis,

so I plan to read a lot in the next little while. Are there any books out

there that are more helpful than others? Are there any to stay away from? I've

heard Tony Attwood's book is pretty good - is this true?

Done with my super long letter. Thanks for the vent and thanks for reading

if you got this far! If anyone has any suggestions or help, I'd love them!

[Guest guest]

You may find something helpful here. It is a wonderful resource. I have

bought copies and given them to my son's IEP team at the high school. Pam

_Welcome to Unlocking the Puzzle!_ (http://aspergertips.com/pageONE.html)

[Guest guest]

Hi. Here is the information regarding your Local Parent Information

Training Center. They should be able to help you locate resources in your

state. I

am also including information about the UTAH Autism Society. Before going

into the IEP it will be very important to write down your son's STRENGTHS and

NEEDS...also his Present Level of Performance in certain areas (social,

academic, community, reading/writing, personal hygiene, etc). The more

information that you can bring to the table (IEP meeting) the better. I've

included

some links of information at the bottom. Pam

Autism Society of Utah

668 South 1300 East

Salt Lake City, UT 84102

(801) 583-7049

Helen Post, Executive Director

Jennie Gibson, Project Coordinator

Utah Parent Center

2290 East, 4500 South, Suite 110

Salt Lake City, UT 84117

(801) 272-1051 (V/TTY); (800) 468-1160 (In UT)

E-mail: upc@...

Here are some links of information you may want to read over...

_Asperger Info: moreno_tips_for_teaching_

(http://www.udel.edu/bkirby/asperger/moreno_tips_for_teaching.html)

_Asperger Syndrome: Guide for Teachers_

(http://www.udel.edu/bkirby/asperger/teachers_guide.html)

_Guidelines for Treatments and Intervention of Asperger's Syndrome_

(http://info.med.yale.edu/chldstdy/autism/astreatments.html)

_Suggestions for IEP goals for students with Autism Spectrum Disorders_

(http://members.tripod.com/autism4dads/iep_goals.htm)

_Supporting Students with Asperger's Syndrome Who Present Behavioral

Challenges, IRCA Articles, Access Autism_

(http://www.iidc.indiana.edu/irca/behavior/supportiASP.html)

_AspergersSyndrome_

(http://maxweber.hunter.cuny.edu/pub/eres/EDSPC715_MCINTYRE/AspergersSyndrome.ht\

ml)

[Guest guest]

In a message dated 11/6/2006 6:19:18 AM Eastern Standard Time, Ppanda65

writes:

Hi. Here is the information regarding your Local Parent Information

Training Center. They should be able to help you locate resources in your

state. I

am also including information about the UTAH Autism Society. Before going

into the IEP it will be very important to write down your son's STRENGTHS and

NEEDS...also his Present Level of Performance in certain areas (social,

academic, community, reading/writing, personal hygiene, etc). The more

information that you can bring to the table (IEP meeting) the better. I've

included

some links of information at the bottom. Pam

Autism Society of Utah

668 South 1300 East

Salt Lake City, UT 84102

(801) 583-7049

Helen Post, Executive Director

Jennie Gibson, Project Coordinator

Utah Parent Center

2290 East, 4500 South, Suite 110

Salt Lake City, UT 84117

(801) 272-1051 (V/TTY); (800) 468-1160 (In UT)

E-mail: upc@...

Here are some links of information you may want to read over...

_Asperger Info: moreno_tips_for_teaching_

(http://www.udel.edu/bkirby/asperger/moreno_tips_for_teaching.html)

_Asperger Syndrome: Guide for Teachers_

(http://www.udel.edu/bkirby/asperger/teachers_guide.html)

_Guidelines for Treatments and Intervention of Asperger's Syndrome_

(http://info.med.yale.edu/chldstdy/autism/astreatments.html)

_Suggestions for IEP goals for students with Autism Spectrum Disorders_

(http://members.tripod.com/autism4dads/iep_goals.htm)

_Supporting Students with Asperger's Syndrome Who Present Behavioral

Challenges, IRCA Articles, Access Autism_

(http://www.iidc.indiana.edu/irca/behavior/supportiASP.html)

_AspergersSyndrome_

(http://maxweber.hunter.cuny.edu/pub/eres/EDSPC715_MCINTYRE/AspergersSyndrome.ht\

ml)

[Guest guest]

Welcome, ,

I have five kids altogether. Two of the 3 boys have HFA and the 3rd boy has

dyslexia, social skill delays and fine motor issues. When our first was dx'd

with autism, they said we had such a minute chance of having another one with

autism. Back then, the rate of autism was thought to be 1 in 10,000. When our

second son was born, I think I was more upset when we realized he had autism.

It was really harder since I felt we had already " given " at the autism pool - or

perhaps like we were being " picked on. " When we found out my last one was a boy

- the 3rd boy - I was pretty upset. Now I wouldn't trade him for the world.

But at the time, I just couldn't imagine a third one with autism and what if he

had it worse than the other 2? But he is what I like to call, " Aspie on the

edges " and doing really good now.

I don't know what other parents think but those were my thoughts at the time. I

know it is really stressful. I feel that when they were young - under age 6 -

were the very worst times. We never went out, we lost our sense of humor a few

times along the way, and I'm surprised we were still together in order to have

number 3 son. lol. I feel that things only improved when we finally got decent

services at school for the 2nd ds. When both boys finally started to talk,

those were big improvements. They were both delayed by a few years in speaking.

So we had a lot of tantrums, a lot of headbanging, a lot of chaos.

Looking back now, I think the best thing I did was to pace myself. There are

things you must get done right away. But when it comes to dealing with " ALL "

the problems, it is overwhelming. If you can hire someone with good experience

in behavior, then that will be helpful. I didn't have all that information way

back when, but I did realize that I should focus on changing one thing at a time

and not try to tackle every problem at once.

As for the screaming, that was so us back then! My first ds especially would

scream and headbang for no reason I could figure out. And he had no language so

it was impossible for him to say anything about it. Even when he got language,

his ability to describe is poor. Because he head banged, I started holding him

down a lot when he started to protect his head. I felt like it lessened the

length of tantrums but who knows - that might have been my wishful thinking.

And I did get pretty beaten up myself by this " method. " He was 5 ish when he

stopped headbanging.

The best idea I can think of with what I know today is to help your ds

communicate in more effective ways and that may lessen the tantruming. There

are " PECS " cards that many people use to help kids who can't yet talk. They are

simply little cards with pictures on it showing an item he might want. So if he

is thirsty, you can have it stuck on the fridge with velcro and he can go get it

and take it to you to show you he wants a drink. Always encourage him to say,

" Drink " or the word he is dealing with at the time.

Dealing with the school is a whole battle in itself. I don't know how helpful

your school will be. Hopefully, they will be helpful! I would let them know

about his dx. Learn as much as you can about the IEP process so you can get a

good IEP. This is the most important thing. Some places just stick our kids

into a class with some NT kids and some disabled kids and our kids will learn

the routine and that's about it! So be wary, ask for data to show progress and

make sure he is learning at a good pace and not going too slowly. You can learn

a lot about IEPs over at www.wrightslaw.com

Roxanna

( ) New here - hi everyone

My name is and my almost three year old son (Ashton) was diagnosed

with PDD-NOS a few days ago. The psychologist said he is pretty sure that it

will actually be Asperger's, but since his language is delayed right now he

can't officially have a diagnosis of Asperger's. He doesn't fit PDD either

since his language is pretty good, so he's falling somewhere between the two.

We'll just wait and see what happens I guess. We're pretty stunned right now

so

it'll take a while to figure things out anyway.

My husband and I also have a 5 year old daughter who has a rare chromosomal

abnormality, so we've been dealing with different issues for quite a while

now.

It's actually pretty strange - the abnormality she has puts her at a high

risk of having an Autism Spectrum Disorder, but she doesn't have one. She has

Autistic tendencies, but no official diagnosis - not even PDD. The only reason

we even had our son evaluated for ASD is because we knew what to look for

because of my daughter's condition. So it's all related in some bizarre kind

of

way, even though we know for sure that our son doesn't have our daughter's

condition.

We're feeling pretty overwhelmed and upset right now, but I'm guessing that's

pretty typical. We have two children, both with disabilities, and aren't

capable of having any more. We attempted in-vitro fertilization twice earlier

this year and were unsuccessful both times, and we can't conceive naturally

because I lost both fallopian tubes due to freak issues (I conceived both of

my

children with only one fallopian tube, then lost it last year - it's a long

story). Now we're wondering if it was a blessing that the IVF wasn't

successful

since our son's psychologist told us that we have a much higher than average

chance of having another child with an ASD since we already have one.

I know I gave TMI in my introduction, but I just have a few questions and am

hoping my background will help with the answers. First, how common is it for

families to have more than one child with an ASD? Is there anyone out there

who has attempted IVF after having one child with an ASD? Were you counseled

against it by your psychologist/doctor/geneticist/anyone official?

Also, I need help! I love my children more than I thought it was possible to

love anyone, and I am so glad I have them. But I am feeling so overwhelmed!

I have no patience and feel like I spend so much time upset with them. I'll

focus on my son's issues since this is an ASD support group. He has tantrums

ALL THE TIME - he will scream and scream and scream and they can last an hour

or more. He is also so stubborn. If he doesn't want to do something, he

simply won't do it. He will also come up and talk to me - he'll babble for

minutes on end, and I have no idea what he's trying to say to me. He gets so

frustrated and so do I. He wants me to understand, but I just don't know what

he's

saying. He is starting preschool in about a week and a half, but his

preschool teacher doesn't know about his diagnosis yet so I may have to

contact the

district to see if a different placement would be better for him (he was

diagnosed after his preschool teacher was assigned).

Also - is anyone out there from Utah? Are there any resources out there

besides preschool? We're not new to the IEP process since our daughter has

one,

and my son's IEP is in a couple weeks. I'd like to know if there are any

typical accommodations for ASD kids and what specific things I should ask for.

I

feel very unprepared for this IEP since I know so little about his diagnosis,

so I plan to read a lot in the next little while. Are there any books out

there that are more helpful than others? Are there any to stay away from? I've

heard Tony Attwood's book is pretty good - is this true?

Done with my super long letter. Thanks for the vent and thanks for reading

if you got this far! If anyone has any suggestions or help, I'd love them!

[Guest guest]

Hi ,

Your stepdaughter and grandson are very lucky to have such a great

grandma/stepmom! Thanks for the info.

My daughter is deaf and we are very familiar with the Signing Times

videos. In fact, the person who created them and " stars " in them is

from Utah! They are great videos and helped us a lot with our

daughter. We are trying to use them with our son, but he just doesn't

seem interested. He'll watch certain videos with no problem, but just

doesn't seem interested in learning to sign. Did your stepdaughter do

anything special to get him to watch, or did he just do it on his own?

I'd love to get him to sign, as I think it would help all of us.

Thanks so much for the suggestion!

Take care,

[Guest guest]

Thanks so much, Pam! I appreciate all of that info, and it's good to

have some stuff to read. I've been afraid to surf because you never

know if what you run into is accurate or not. Thanks again!

[Guest guest]

Hi Roxanna,

Wow - I'm definitely going to stop whining now. How challenging to

have two kids with HFA and a third with issues also. Thank you for

all the info.

My son has been having these screaming tantrums for about 2 years

now, and I thought they were strange from the start. Unfortunately,

I had family (in particular my mother-in-law) who said he was just

spoiled and undisciplined, and he'd do much better if I'd just spank

him to teach him who's boss. Thank goodness I didn't listen to that,

because I can't imagine how frustrated he'd have been if he was

screaming because he couldn't communicate, and I just spanked him for

it. The thought makes me shudder. I mean, I'm sure I've done lots

of things I shouldn't have as a parent, but I'm glad that wasn't one

of them. I'm glad to hear that you held your son down - I've started

doing that too. He doesn't headbang (yet), but his tantrums are so

intense that I'm almost afraid for him. So I sit him on my lap,

cross his arms over each other, and hold him tight. Miraculously it

seems to calm him down and I think the duration and intensity are

decreasing. Maybe just wishful thinking like you said, but hopefully

not.

PECS is something we used with my daughter before she started talking

well. I can't believe I didn't think of using it with my son. I

think it would work well for him, since he's so visually oriented.

Thanks for the great suggestion, and I still have the cards around

here somewhere! Ugh - now to find them.

I really appreciate all the info. I'm going to print it out, stick it

in a folder, and read it again when I'm more coherent. Good luck

with your sons!

Take care,

[Guest guest]

Our son also is diagnosed with HFA. His speech is only just starting to

progress now. He was always a very quiet baby but when he hit four he went

through the whole tantrum thing, he would scream and kick at walls. He could

only babble at that stage so it as hard to work out what was wrong with him. It

took us a while to realise that he was just tired and over stimulated and that

was why he acted out. We had to really cut back on a lot of our social outings

around that time. Now at 6 he is less inclined to have meltdowns but he does

still get tired quickly. We are better able to read his signs and know when

he's had enough. He is also more verbal now and I can ask him if he feels tired

and he'll tell me yes.

Welcome to the group. I hope you'll find a lot of support here. Your post

reminded me of my own feelings when my son was the same age. Interestingly

Isaac was also diagnosed PDD-NOS around three years of age but later at five it

was clear that he was HFA.

Beck

( ) New here - hi everyone

My name is and my almost three year old son (Ashton) was diagnosed

with PDD-NOS a few days ago. The psychologist said he is pretty sure that it

will actually be Asperger's, but since his language is delayed right now he

can't officially have a diagnosis of Asperger's. He doesn't fit PDD either

since his language is pretty good, so he's falling somewhere between the two.

We'll just wait and see what happens I guess. We're pretty stunned right now

so

it'll take a while to figure things out anyway.

My husband and I also have a 5 year old daughter who has a rare chromosomal

abnormality, so we've been dealing with different issues for quite a while

now.

It's actually pretty strange - the abnormality she has puts her at a high

risk of having an Autism Spectrum Disorder, but she doesn't have one. She has

Autistic tendencies, but no official diagnosis - not even PDD. The only reason

we even had our son evaluated for ASD is because we knew what to look for

because of my daughter's condition. So it's all related in some bizarre kind

of

way, even though we know for sure that our son doesn't have our daughter's

condition.

We're feeling pretty overwhelmed and upset right now, but I'm guessing that's

pretty typical. We have two children, both with disabilities, and aren't

capable of having any more. We attempted in-vitro fertilization twice earlier

this year and were unsuccessful both times, and we can't conceive naturally

because I lost both fallopian tubes due to freak issues (I conceived both of

my

children with only one fallopian tube, then lost it last year - it's a long

story). Now we're wondering if it was a blessing that the IVF wasn't

successful

since our son's psychologist told us that we have a much higher than average

chance of having another child with an ASD since we already have one.

I know I gave TMI in my introduction, but I just have a few questions and am

hoping my background will help with the answers. First, how common is it for

families to have more than one child with an ASD? Is there anyone out there

who has attempted IVF after having one child with an ASD? Were you counseled

against it by your psychologist/doctor/geneticist/anyone official?

Also, I need help! I love my children more than I thought it was possible to

love anyone, and I am so glad I have them. But I am feeling so overwhelmed!

I have no patience and feel like I spend so much time upset with them. I'll

focus on my son's issues since this is an ASD support group. He has tantrums

ALL THE TIME - he will scream and scream and scream and they can last an hour

or more. He is also so stubborn. If he doesn't want to do something, he

simply won't do it. He will also come up and talk to me - he'll babble for

minutes on end, and I have no idea what he's trying to say to me. He gets so

frustrated and so do I. He wants me to understand, but I just don't know what

he's

saying. He is starting preschool in about a week and a half, but his

preschool teacher doesn't know about his diagnosis yet so I may have to

contact the

district to see if a different placement would be better for him (he was

diagnosed after his preschool teacher was assigned).

Also - is anyone out there from Utah? Are there any resources out there

besides preschool? We're not new to the IEP process since our daughter has

one,

and my son's IEP is in a couple weeks. I'd like to know if there are any

typical accommodations for ASD kids and what specific things I should ask for.

I

feel very unprepared for this IEP since I know so little about his diagnosis,

so I plan to read a lot in the next little while. Are there any books out

there that are more helpful than others? Are there any to stay away from? I've

heard Tony Attwood's book is pretty good - is this true?

Done with my super long letter. Thanks for the vent and thanks for reading

if you got this far! If anyone has any suggestions or help, I'd love them!

[Guest guest]

Hi

This brings up a good issue for our family. My 6yr old is just beginning for

the first time her life to throw " temper tantrums " . I have suspected all along

that these were autisim related and not an act of being spoiled. She only does

this when she is asked to do a transitional thing and in her flustration can't

talk well to me. An example would be transitioning from one homework subject to

another.

M.

kaityplusone <stefanieroch@...> wrote:

Hi Roxanna,

Wow - I'm definitely going to stop whining now. How challenging to

have two kids with HFA and a third with issues also. Thank you for

all the info.

My son has been having these screaming tantrums for about 2 years

now, and I thought they were strange from the start. Unfortunately,

I had family (in particular my mother-in-law) who said he was just

spoiled and undisciplined, and he'd do much better if I'd just spank

him to teach him who's boss. Thank goodness I didn't listen to that,

because I can't imagine how frustrated he'd have been if he was

screaming because he couldn't communicate, and I just spanked him for

it. The thought makes me shudder. I mean, I'm sure I've done lots

of things I shouldn't have as a parent, but I'm glad that wasn't one

of them. I'm glad to hear that you held your son down - I've started

doing that too. He doesn't headbang (yet), but his tantrums are so

intense that I'm almost afraid for him. So I sit him on my lap,

cross his arms over each other, and hold him tight. Miraculously it

seems to calm him down and I think the duration and intensity are

decreasing. Maybe just wishful thinking like you said, but hopefully

not.

PECS is something we used with my daughter before she started talking

well. I can't believe I didn't think of using it with my son. I

think it would work well for him, since he's so visually oriented.

Thanks for the great suggestion, and I still have the cards around

here somewhere! Ugh - now to find them.

I really appreciate all the info. I'm going to print it out, stick it

in a folder, and read it again when I'm more coherent. Good luck

with your sons!

Take care,

---------------------------------

Sponsored Link

Get an Online or Campus degree - Associate's, Bachelor's, or Master's - in less

than one year.

[Guest guest]

Oh , I have definitely been there. My ds is almost 6 and we have been

going through testing for 6 months and finally got a dx of Asperger traits,

but

everything under the autism umbrella. Dysgraphia, ADHD, Pragmatic Language

disorder.....well you get the message. He is in OT and Speech Therapy now.

One thing I have learned about him and his traits, he is not stubborn, but

rigid in his behaviors, he also has Sensory issues. I was overwhelmed like

you. I do still get that way at times. My son at 3 was a lot like your son, but

he wouldn't

verbalize anything, I thought he was just stubborn. I have learned a lot

about

AS from this group as well as my local library, the internet, my wonderful OT

and

speech therapist. I have also contacted the local Autism Society and they are

more

than willing to help.

I hope you find this to be somewhat helpful

Always know that you are NOT ALONE!!

Kim

help you also

stefanieroch@... wrote:

My name is and my almost three year old son (Ashton) was

diagnosed

with PDD-NOS a few days ago. The psychologist said he is pretty sure that it

will actually be Asperger's, but since his language is delayed right now he

can't officially have a diagnosis of Asperger's. He doesn't fit PDD either

since his language is pretty good, so he's falling somewhere between the two.

We'll just wait and see what happens I guess. We're pretty stunned right now so

it'll take a while to figure things out anyway.

My husband and I also have a 5 year old daughter who has a rare chromosomal

abnormality, so we've been dealing with different issues for quite a while now.

It's actually pretty strange - the abnormality she has puts her at a high

risk of having an Autism Spectrum Disorder, but she doesn't have one. She has

Autistic tendencies, but no official diagnosis - not even PDD. The only reason

we even had our son evaluated for ASD is because we knew what to look for

because of my daughter's condition. So it's all related in some bizarre kind of

way, even though we know for sure that our son doesn't have our daughter's

condition.

We're feeling pretty overwhelmed and upset right now, but I'm guessing that's

pretty typical. We have two children, both with disabilities, and aren't

capable of having any more. We attempted in-vitro fertilization twice earlier

this year and were unsuccessful both times, and we can't conceive naturally

because I lost both fallopian tubes due to freak issues (I conceived both of my

children with only one fallopian tube, then lost it last year - it's a long

story). Now we're wondering if it was a blessing that the IVF wasn't successful

since our son's psychologist told us that we have a much higher than average

chance of having another child with an ASD since we already have one.

I know I gave TMI in my introduction, but I just have a few questions and am

hoping my background will help with the answers. First, how common is it for

families to have more than one child with an ASD? Is there anyone out there

who has attempted IVF after having one child with an ASD? Were you counseled

against it by your psychologist/doctor/geneticist/anyone official?

Also, I need help! I love my children more than I thought it was possible to

love anyone, and I am so glad I have them. But I am feeling so overwhelmed!

I have no patience and feel like I spend so much time upset with them. I'll

focus on my son's issues since this is an ASD support group. He has tantrums

ALL THE TIME - he will scream and scream and scream and they can last an hour

or more. He is also so stubborn. If he doesn't want to do something, he

simply won't do it. He will also come up and talk to me - he'll babble for

minutes on end, and I have no idea what he's trying to say to me. He gets so

frustrated and so do I. He wants me to understand, but I just don't know what

he's

saying. He is starting preschool in about a week and a half, but his

preschool teacher doesn't know about his diagnosis yet so I may have to contact

the

district to see if a different placement would be better for him (he was

diagnosed after his preschool teacher was assigned).

Also - is anyone out there from Utah? Are there any resources out there

besides preschool? We're not new to the IEP process since our daughter has one,

and my son's IEP is in a couple weeks. I'd like to know if there are any

typical accommodations for ASD kids and what specific things I should ask for. I

feel very unprepared for this IEP since I know so little about his diagnosis,

so I plan to read a lot in the next little while. Are there any books out

there that are more helpful than others? Are there any to stay away from? I've

heard Tony Attwood's book is pretty good - is this true?

Done with my super long letter. Thanks for the vent and thanks for reading

if you got this far! If anyone has any suggestions or help, I'd love them!

[Guest guest]

Some kids have a lot of problems with transitioning. You can try several things

to see what works - use a timer to show her how much time is left in that

subject/class. Remind her several times as well. ( " Five more minutes and then

we start spelling. " ) Give her a schedule to use also so she knows what comes

next. (visual schedule for younger kids or kids who don't read well.) Some

kids also do ok with singing a transition song. In pre-school, they always sang

a song when it was time to go to the next activity.

Roxanna

Re: ( ) New here - hi everyone

Hi

This brings up a good issue for our family. My 6yr old is just beginning for

the first time her life to throw " temper tantrums " . I have suspected all along

that these were autisim related and not an act of being spoiled. She only does

this when she is asked to do a transitional thing and in her flustration can't

talk well to me. An example would be transitioning from one homework subject to

another.

M.

kaityplusone <stefanieroch@...> wrote:

Hi Roxanna,

Wow - I'm definitely going to stop whining now. How challenging to

have two kids with HFA and a third with issues also. Thank you for

all the info.

My son has been having these screaming tantrums for about 2 years

now, and I thought they were strange from the start. Unfortunately,

I had family (in particular my mother-in-law) who said he was just

spoiled and undisciplined, and he'd do much better if I'd just spank

him to teach him who's boss. Thank goodness I didn't listen to that,

because I can't imagine how frustrated he'd have been if he was

screaming because he couldn't communicate, and I just spanked him for

it. The thought makes me shudder. I mean, I'm sure I've done lots

of things I shouldn't have as a parent, but I'm glad that wasn't one

of them. I'm glad to hear that you held your son down - I've started

doing that too. He doesn't headbang (yet), but his tantrums are so

intense that I'm almost afraid for him. So I sit him on my lap,

cross his arms over each other, and hold him tight. Miraculously it

seems to calm him down and I think the duration and intensity are

decreasing. Maybe just wishful thinking like you said, but hopefully

not.

PECS is something we used with my daughter before she started talking

well. I can't believe I didn't think of using it with my son. I

think it would work well for him, since he's so visually oriented.

Thanks for the great suggestion, and I still have the cards around

here somewhere! Ugh - now to find them.

I really appreciate all the info. I'm going to print it out, stick it

in a folder, and read it again when I'm more coherent. Good luck

with your sons!

Take care,

---------------------------------

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[Guest guest]

Hi Kim,

I can't believe I haven't noticed this before. My son has seemed SO

STUBBORN - and since I'm pretty stubborn too, I just assumed he got it

from me. I even mentioned it to my pediatrician when he was about 18

months. He just refused to do something if he didn't want to do it. I

asked my pediatrician if it was normal for a child so young to be so

stubborn and defiant. He said that kids this age aren't stubborn

because they don't know how to be. I thought, yippee! My son is

advanced for his age! He must be brilliant! It NEVER crossed my mind

that he was being rigid instead of stubborn (and what a difference

there is between those two things). That puts all of this in a whole

different light. Our psychologist was very surprised that he didn't

have to adhere to a particular routine or schedule. I told him he had

a hard time transitioning, but that was it. Now I'm wondering if his

tantrums are because he is trying to stick to a routine, and I'm not

allowing him to. Thank you so much for that info - now we can start

trying to figure this out.

[Guest guest]

Hi Beck,

Thanks so much for the welcome and the info. I'm so grateful to have a

group of people who can share their experiences with me!

[Guest guest]

I am so glad I could help shed some light. I am not trying to scare you, but

since my son has started school

the anxiety and " sticking to a routine " is much worse. He is

also more verbal, so I know why he is having meltdowns...we missed the bus one

day and he went absolutely nuts. I do know how to handle him better though.

lol..

keep me posted on your progress and if I can help you, let me know.

Kim

kaityplusone <stefanieroch@...> wrote:

Hi Kim,

I can't believe I haven't noticed this before. My son has seemed SO

STUBBORN - and since I'm pretty stubborn too, I just assumed he got it

from me. I even mentioned it to my pediatrician when he was about 18

months. He just refused to do something if he didn't want to do it. I

asked my pediatrician if it was normal for a child so young to be so

stubborn and defiant. He said that kids this age aren't stubborn

because they don't know how to be. I thought, yippee! My son is

advanced for his age! He must be brilliant! It NEVER crossed my mind

that he was being rigid instead of stubborn (and what a difference

there is between those two things). That puts all of this in a whole

different light. Our psychologist was very surprised that he didn't

have to adhere to a particular routine or schedule. I told him he had

a hard time transitioning, but that was it. Now I'm wondering if his

tantrums are because he is trying to stick to a routine, and I'm not

allowing him to. Thank you so much for that info - now we can start

trying to figure this out.

---------------------------------

Everyone is raving about the all-new beta.

[Guest guest]

Same with my daughter. I actually saw her stubbornness as a good

personality trait. I am very stubborn and felt that it would help her

not getting stepped on though life with some coaching. I felt she

knew what she wanted and other just did not 'get it'. I tried to help

her express her emotions instead of throwing tantrums. But I thought

she would grow out of this stage. I did not realize she had a real

diagnosis. I felt horrible when others started mentioning autism

because I am an Occupational Therapist. I did not see anything out of

the ordinary. She had a speech delay by 2 but I have dyslexia and my

mother did not talk until she was 5. I thought she was focused on

other areas and would refocus when the time called for it. All I can

do now is keep my eyes open.

Jen

>

> Hi Kim,

>

> I can't believe I haven't noticed this before. My son has seemed SO

> STUBBORN - and since I'm pretty stubborn too, I just assumed he got it

> from me. I even mentioned it to my pediatrician when he was about 18

> months. He just refused to do something if he didn't want to do it. I

> asked my pediatrician if it was normal for a child so young to be so

> stubborn and defiant. He said that kids this age aren't stubborn

> because they don't know how to be. I thought, yippee! My son is

> advanced for his age! He must be brilliant! It NEVER crossed my mind

> that he was being rigid instead of stubborn (and what a difference

> there is between those two things). That puts all of this in a whole

> different light. Our psychologist was very surprised that he didn't

> have to adhere to a particular routine or schedule. I told him he had

> a hard time transitioning, but that was it. Now I'm wondering if his

> tantrums are because he is trying to stick to a routine, and I'm not

> allowing him to. Thank you so much for that info - now we can start

> trying to figure this out.

>

>

>