new to group

[Guest guest]

Thank you so much!

________________________________

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of Maggie

Everts

Sent: Thursday, June 21, 2007 11:20 AM

To: Texas-Autism-Advocacy

Subject: Re: New to Group

My children go to Clayton Elementary. While they have not participated

in the preschool program, I've heard their program is great and their

administration is very knowledgable about autism and uses many

successful inclusion strategies. We live in Circle C.

It is not close by, but we go to Dr. Harkins (a developmental

pediatrician who has a son with Asperger's Syndrome) in San and

there is a long wait for a full evaluation so I would begin the process

ASAP.

Maggie

Karyn <karyn.anderson@...

<mailto:karyn.anderson%40netxv.net> > wrote:

Hi!

My name is Karyn and I joined this group to learn more to help some of

the families that I work with. I work as an Early Intervention

Specialist for ECI and I have a daughter that is 2 with Down Syndrome.

I have a family I have been working with for 8 months and we suspect

autism. The pediatrician refuses to do anything until he turns 3 but

doesn't think he has it after spending 2 minutes with him. The family

has just found out they will be relocating to Austin next month.

Although I am sad to see them go, I think it will be best as they will

have access to a lot more resources. I was hoping some could help me

locate resources in Austin for them. Also, they will be looking for a

pediatrician and I was hoping I could get some suggestions because we

would like to have him tested soon after they move. They will be moving

to South Austin.

Thanks in advance for your help!

Karyn

Early Intervention Specialist

[Guest guest]

I believe you can get a diagnosis from the child psychologist, the

neurologist & even an autism center (ex: TEACCH). All of these places

can give you a prognosis also and expound on the best teaching style

for your child.

You might also want to check out a DAN! practioner.

Good Luck and let us all know how it works out.

Shanna ('s mom)

>

> I just joined the group and am not sure where to start. Our

daughter

> (1st grade) has always had speech delays and processing problems

and we

> now feel that she may have a very mild case of Autism. We are

SOOOO

> confused. We spoke to a child psychologist yesterday (she's never

met

> our daughter)but after speaking to us, mentioned this possible

> diagnosis. Her school requested that we talk to one to find out our

> daughters learning style. I have done some research in the past on

> this, but our daughter didn't fit all the commonalities. Now that

> someone else has mentioned it, I'm beginning to wonder. Any

> information would be greatly appreciated. We are not sure where to

go

> and do not want for a quick label to be attached, especially by our

> school district. I've read that a pediatric neurologist maybe be

good

> to consult? Thanks, Shanon

>

[Guest guest]

I believe you can get a diagnosis from the child psychologist, the

neurologist & even an autism center (ex: TEACCH). All of these places

can give you a prognosis also and expound on the best teaching style

for your child.

You might also want to check out a DAN! practioner.

Good Luck and let us all know how it works out.

Shanna ('s mom)

>

> I just joined the group and am not sure where to start. Our

daughter

> (1st grade) has always had speech delays and processing problems

and we

> now feel that she may have a very mild case of Autism. We are

SOOOO

> confused. We spoke to a child psychologist yesterday (she's never

met

> our daughter)but after speaking to us, mentioned this possible

> diagnosis. Her school requested that we talk to one to find out our

> daughters learning style. I have done some research in the past on

> this, but our daughter didn't fit all the commonalities. Now that

> someone else has mentioned it, I'm beginning to wonder. Any

> information would be greatly appreciated. We are not sure where to

go

> and do not want for a quick label to be attached, especially by our

> school district. I've read that a pediatric neurologist maybe be

good

> to consult? Thanks, Shanon

>

[Guest guest]

In a message dated 4/28/08 12:35:37 P.M. Eastern Daylight Time,

TBrown@... writes:

I am Tony, married to Dan live in the south east of England and have two

daughters the eldest of which Grace has just been diagnosed with autism.

Hope to get to know others form the list

hi im eric my wife is pennie and our daughter is abby 11 diagnosed closer

to 2. we live in michigan hope you find the group as helpful as we have.

eric abbys dad

**************Need a new ride? Check out the largest site for U.S. used car

listings at AOL Autos.

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

[Guest guest]

HI Theresa

it has been a long road to get a diagnosis on Grace as she is also very

verbal, but does have learning disability and is developementally delayed in

various areas, although with therapy has caught up greatly in gross motor

skills.

There is also a consideration that she may have ADD but we are waiting for

our referal, I have already asiad that I do not want her medicated as I think

that is still too experimental at this stage.

Grace already has an educational statement so the autism label will not help

with that but I think it will help the people around her understand a little

of her difficulties

Tony

[Guest guest]

HI Theresa

it has been a long road to get a diagnosis on Grace as she is also very

verbal, but does have learning disability and is developementally delayed in

various areas, although with therapy has caught up greatly in gross motor

skills.

There is also a consideration that she may have ADD but we are waiting for

our referal, I have already asiad that I do not want her medicated as I think

that is still too experimental at this stage.

Grace already has an educational statement so the autism label will not help

with that but I think it will help the people around her understand a little

of her difficulties

Tony

[Guest guest]

HI Sandi

My daughters are just eight and almost two, end of june.

We spent Christmas in Houston and Fredricksburg this year! Fortunatley due

to being well prepared and my dog flying with me Grace was great on the plane!

Just as well really the flight was best part of 10 hours

Tony

[Guest guest]

Wow Tony, your Grace sounds a lot like my

I think one of the best things I've learned from this group is that not all

people with autism are non verbal, or have very little verbal abilities.

While I always thought it was the case from my readings and reading about

how there was a wide range of the spectrum etc. I would constantly hear from

dr's and teachers that they didn't think was on the spectrum based

largely on the fact that she is so verbal. Even though her speech and

language is immensely delayed for her age, and the speech that she does

have, doesn't really follow a typical pattern. Words and such are often

jumbled or said in different order than what they should be for the meaning

she is trying to convey.

Either way, if they tell me she's not, that it's only a learning delay and

nothing more then I'll accept it. It's just that mama feeling you get that

something is just not right... know what I mean? Sure you do

has been diagnosed as AD/HD already, and while I don't doubt that dx

(because our whole family has it in some form or another, as well as having

extended family members that have been dx with it as well) it doesn't answer

all my concerns. We do medicate her with a very low dose of stimulant meds,

but it's so apparant as to how well it works, that she'd be at an even

bigger disadvantage at school without it. As it is we only give it to her on

school days and her afternoon dose only when she has therapy after school.

When she's missed it therapy is absolutely non productive and has often been

cut short because she just can't even pull herself together to look at the

therapist let alone attempt any sounds. So I started making sure she has it

and therapy has gone much better since.

But again that diagnosis doesn't answer all my questions about her different

behaviors and such.

Theresa

> HI Theresa

>

> it has been a long road to get a diagnosis on Grace as she is also very

> verbal, but does have learning disability and is developementally delayed

> in

> various areas, although with therapy has caught up greatly in gross motor

> skills.

>

> There is also a consideration that she may have ADD but we are waiting for

>

> our referal, I have already asiad that I do not want her medicated as I

> think

> that is still too experimental at this stage.

>

> Grace already has an educational statement so the autism label will not

> help

> with that but I think it will help the people around her understand a

> little

> of her difficulties

>

> Tony

>

>

[Guest guest]

Oy! I remember my years of job seeking and paying back student loans. What field

is going into?

17 y/o dd with OCD, anxiety/depression, NVLD & Asperger's

> >

> > Congratulations on 's graduation!!! :-) BTW, I graduated from

UNC, too.

[Guest guest]

Sue, always happy to read about success and what a difference an experienced

therapist can make!

> >

> > Hi,

> > I have a 12yr old daughter diagnosed 1yr ago with OCD. We did ERT/CBT

> > for 7 months which worked for handwashing and other things like repeating

> > and checking but her anxiety while she was in school (worried I wouldn't get

> > her from school) continued so we decided to try meds. Prozac was

[Guest guest]

Hi no he isn't on ssris as he is just six

And up until about a year ago behavioral therapy

Was working well enough to get us through. We thought

We might need anxiety meds first as he has

Severe anxiety and everything seems to scare him.

The OCD escalated overnight and has had chronic

Strep and worsening of pandas symptoms since

Then. His OCD unfortunately is worst in the

Thinking area. What I mean is he gets stuck

Thoughts and can't stop talking and it was so

Bad this last pandas episode I thought he was

Literally going to go insane! I was and still am

Terrified for him. My big concern is u can't fight

Obsessive thoughts the way u do rituals( I also

Have OCD, under control) without meds and if meds

Make pandas worse what do we do to help him.

He is suffering!!! Also yes his autism has gotten

Worse also in the social area and less eye contact.

Sent from my iPhone

> Hi Debbie, so do you mean he is on an SSRI and getting worse? With PANDAS (or

even non-PANDAS), you start with the lowest dose that is effective with an SSRI.

Although if this is the only SSRI he has tried, another one may work better;

many times a child has to trial the different OCD meds to find the *one* that

works best for them, first one, second one, may not work well.

>

> We only have tried Celexa with my son (23, OCD, dysgraphia, HFA/Aspergers) and

it worked well for him. Even PANDAS kids can take an SSRI, but generally you try

to treat the PANDAS too, if not first.

>

> If he is also on some meds to treat PANDAS? Some children on long-term

antibiotics can have reactions (including behavior) to them...can't recall a

term for it, but due to the digestive changes. ...OK, googled and found an

article on what I mean:

> http://www.tacanow.org/family-resources/what-is-yeast-overgrowth/

>

> And I'm curious -- is the autism worse too or just the OCD? What type OCD

behaviors does he have, more the obsessive and/or ritual kind that can go along

with autism?

>

>

> single mom, 3 sons

>

>

> >

> > My son is six and is high functioning autistic with

> > Anxiety disorder and OCD. His OCD has worsened

> > Because he also has p.a.nd.a.s. we r seeing

> > So many different specialists for this but my question is

> > OCD meds normally given actually make the pandas

> > Worse. Does anybody on this list have children

> > With pandas and if so what kind of meds if any

> > Seem to help? Thank you, debbie

> >

>

>

[Guest guest]

Hi no he isn't on ssris as he is just six

And up until about a year ago behavioral therapy

Was working well enough to get us through. We thought

We might need anxiety meds first as he has

Severe anxiety and everything seems to scare him.

The OCD escalated overnight and has had chronic

Strep and worsening of pandas symptoms since

Then. His OCD unfortunately is worst in the

Thinking area. What I mean is he gets stuck

Thoughts and can't stop talking and it was so

Bad this last pandas episode I thought he was

Literally going to go insane! I was and still am

Terrified for him. My big concern is u can't fight

Obsessive thoughts the way u do rituals( I also

Have OCD, under control) without meds and if meds

Make pandas worse what do we do to help him.

He is suffering!!! Also yes his autism has gotten

Worse also in the social area and less eye contact.

Sent from my iPhone

> Hi Debbie, so do you mean he is on an SSRI and getting worse? With PANDAS (or

even non-PANDAS), you start with the lowest dose that is effective with an SSRI.

Although if this is the only SSRI he has tried, another one may work better;

many times a child has to trial the different OCD meds to find the *one* that

works best for them, first one, second one, may not work well.

>

> We only have tried Celexa with my son (23, OCD, dysgraphia, HFA/Aspergers) and

it worked well for him. Even PANDAS kids can take an SSRI, but generally you try

to treat the PANDAS too, if not first.

>

> If he is also on some meds to treat PANDAS? Some children on long-term

antibiotics can have reactions (including behavior) to them...can't recall a

term for it, but due to the digestive changes. ...OK, googled and found an

article on what I mean:

> http://www.tacanow.org/family-resources/what-is-yeast-overgrowth/

>

> And I'm curious -- is the autism worse too or just the OCD? What type OCD

behaviors does he have, more the obsessive and/or ritual kind that can go along

with autism?

>

>

> single mom, 3 sons

>

>

> >

> > My son is six and is high functioning autistic with

> > Anxiety disorder and OCD. His OCD has worsened

> > Because he also has p.a.nd.a.s. we r seeing

> > So many different specialists for this but my question is

> > OCD meds normally given actually make the pandas

> > Worse. Does anybody on this list have children

> > With pandas and if so what kind of meds if any

> > Seem to help? Thank you, debbie

> >

>

>

[Guest guest]

Hi,

I'm new to this list and new to OCD as well. My daughter is 12 and was

diagnosed last summer. Her symptoms don't seem as severe as those I've read on

this list so far, however they continue to impact our family in a big way. We

have tried two different psychiatrists who each did the therapy part as well,

yet I'm not sure at this point the therapy is the appropriate type. No one has

explained OCD to her. They will ask me and my husband what bothers us most and

try to set guidelines for her to wean off doing that behavior, and it works to a

point but over al, her OCD seems to be getting worse. She may be able to stop a

certain behavior but she adds new ones on too. She has been taking 125 mg

sertraline / day but there is just a very minor difference.

I don't yet know enough about OCD to use proper terminology, but this is what I

see happening. Her compulsion is to ask us questions repeatedly. This usually

happens at times of separation from us, such as school drop off, bed time, when

either she or I leave the house. Even though she knows the answers, she will ask

a series of questions over and over again. (Time of return, etc.) They are

usually in the same order, and we have to answer a certain way-yes/no, or

sometimes " right " , or she gets upset and starts over. There are times when it is

obvious the anxiety about separation might be the trigger, but other times it

really seems like a control thing, where not getting an answer wouldn't be

upsetting, such as " Isn't the expression on our puppy's face cute? " and she will

ask that over repeatedly if she doesn't feel my response was satisfactory for

any reason.

I purchased a few books, they all mention CBT and exposre/RP, and I don't think

our psychiatrist is doing it the way the books describe. He's making us as

parents responsible by having us pick which scenario is too stressful/annoying

for us to answer the questions. He has said he doesn't believe in the exposure

approach but is using it because it seems to be working a bit with her.

I will investigate a new therapist for her.

I have the book, What to do When Your Brain Gets Stuck " My daughter flat out

refuses to read it. And why would she want to anyway?? OCD isn't a problem for

her because the whole family meets her needs by answering her endless

questions. So the doctor plays games (Guess Who...) at each appointment, doesn't

require her to address her OCD, and she won't talk about it with us so I feel a

bit lost in what direction to take next. I've thought about quitting my part in

her rituals, and then maybe she will feel uncomfortable enough to want to

address this on her own. She has to want to do it herself.

I know many of you have it much worse so I won't complain other than to say it

does get very frustrating for us in the moment. And of course we worry about her

and if this will increase in the future.

Any input would be appreciated. I just need to understand this a bit better.

Thanks,

Trudy