Re: New to Forum

[Guest guest]

Hi ,

Welcome! My name is Lori, and I have an almost 4 year old little girl

named . was diagnosed with Autism Spectrum, Anxiety

Disorder, and Sensory Modulation Dysfunction just after her third

birthday.

From my experience, the beginning of the journey is the toughest. So

many emotions, being overwhelmed, exhausted, etc. It does get better!

You have already taken the important first step, which is getting the

help your daughter needs, and the second step which is seeking out

support. Have you found a support group in your area? I found it

really helpful to talk to more " experienced " moms, especially about how

to navigate the school system. We are located in Bucks County, PA.

I've heard good things about the services in New Jersey.

I know what you mean about the friends thing. Through this whole

process we have learned who our true friends are. Some of our now

closer friends have been supportive from the beginning...asking

questions, reading books on their own to learn more, not treating

any differently. There are a few people which whom I do not speak to

anymore...those are the ones who ignored and never spoke her name

again after I shared the diagnosis with them. Life is too short and I

don't need them in my life! I have also met many wonderful people in

the autism community.

Like I said before, the beginning is tough. I think there were some

days when I didn't leave my house because I couldn't stop crying. The

first year of my younger daughter's life (she's almost 2) was a complete

blur. Some things that helped me...talking to a therapist/psychologist,

meeting other parents, internet groups such as this one, support group

meetings, my husband, our family members, taking a break from the kids

to recharge my batteries, seeing 's progress, prayer, coffee. It

does get better. This experience has really changed me. You know the

saying...what doesn't kill you only makes you stronger.

Take care,

Lori

>

> hi everyone...

>

> I am new to this forum and wanted to introduce myself. I have a 2

> yr old daughter, Jadyn who has been diagnosed with Classic Autism

> and Sensory Integration Disorder and is non-verbal...its been quite

> a long journey already. It seems every week there is a dr appt for

> something or another. We are in EI and get 22 hrs of services each

> week--DI, OT, ABA, PT, nutrition, and Speech---so we are really busy

> as you can imagine.

>

> I am really looking to meet some great new friends who can help me

> and my daughter on this long adventure we have in front of us. Many

> of the people who we thought were our " friends " have taken a step

> back from us when we got the diagnosis--so much for friends....

>

> I am seeking help, guidance, advice, and support from you wonderful

> people---and anything I can learn--can only help Jadyn as she

> grows. I live in Central New Jersey and am trying to now navigate

> the school system and placement....so much to learn, so quickly.

>

> Any initial help for those parents of newly diagnosed autistic

> children? Where do I start to move on with this.......

>

>

>

[Guest guest]

welcome here. there is many ways to begin but it depends on where you

daughter is functionally. I to live in Ohio and have autism but am of

married and have of 4 kids with Aspergers syndrome.

Sondra

[Guest guest]

Hey Grandma! How are Grandpa and the new aunt and uncles doing? And

how are Aimee and Delaney? Are y'all gettin' much sleep?

PennY

>

> welcome here. there is many ways to begin but it depends on where

you

> daughter is functionally. I to live in Ohio and have autism but am

of

> married and have of 4 kids with Aspergers syndrome.

> Sondra

>

[Guest guest]

Hi ,

Welcome!

I'm PennY (with a " Y " ) from Michigan, not to be confused with PennIE

from Michigan. My almost 7 year old daughter was diagnosed as

ASD and SID at 25 months of age. She was non-verbal, too. She's in

a general ed kindergarten now, with a classroom aide, and is

academically on target. Her pre-speech skills and non-verbal

communication is weak, and we're working hard on that right now with

RDI. (www.rdiconnect.com) And she's dialoguing now, but just short

of conversational. She has quite an interest in animals! I wish I

could get our family a DOG! (I have two other children, too.)

One thing I want to point out as you intervene is to NOT worry too

much about the " verbal " part until your Jaydn is communicating NON-

verbally. Communication is Experience Sharing with others, not just

words by themselves, and all of our emphasis in the early days (as

we were led by well meaning professionals) was to get those words.

My child didn't understand how to intERact at all. We are NOW going

back and giving her a chance to " re-do " the non-verbal, pre-speech

skills she lost when she regressed at right around 12 months of

age.

You'll like our group. I've learned soooooooooo much here! There's

pretty much an " expert " on just about everything here! Some of us

are doing " the diet " (do you know about the GFCF diet? we're one of

the families who had huge success with it), some have had success

removing just one or two foods, some haven't had to do dietary

intervention. Among us, there is a wealth of information and

experience, and sometimes we get together just to vent about

something, or share a success with one another. The real EXPERTS

are the wonderful ladies who can tell us their experience of what

life is like from the perspective of an adult on the spectrum, and I

have learned sooooooo very much from them.

Welcome to our group!

PennY

>

> hi everyone...

>

> I am new to this forum and wanted to introduce myself. >

>

[Guest guest]

All is tired here . Aimee is to be starting the hormone issues and the

lack of sleep issues and the much tears over everythings and so this

is overwhelming me much so but the church I to attend ahs been to

bring of me food this week much nights per week. so it helps of me

much so to not have to worry over food.

sondra

In Autism_in_Girls , " penelope_fam "

wrote:

>

> Hey Grandma! How are Grandpa and the new aunt and uncles doing? And

> how are Aimee and Delaney? Are y'all gettin' much sleep?

>

> PennY

>

>

> >

> > welcome here. there is many ways to begin but it depends on where

> you

> > daughter is functionally. I to live in Ohio and have autism but am

> of

> > married and have of 4 kids with Aspergers syndrome.

> > Sondra

> >

>

[Guest guest]

Hi ,

Welcome. I am Massachusetts mother to a 13 year old daughter who is on

the Autism spectrum and also has Obsessive Compulsive Disorder and a possible

mitochondrial disorder. This group is great--I've been on several lists and in

many groups and this one stands out for the nonjudgmentalism and the genuine

caring support. I also hugely value the input of the members on the spectrum.

Where to start? You know, years ago I would've been able to answer that

more readily. There was less information out there, and far less controversy.

Now there are these unfortunate divides, these " camps " that advocate one

treatment over another, one approach over another, and it can be difficult to

know

what to do. I would strongly recommend that you get in touch with your local

Autism Center if you haven't already done so. Many have a lending library that

can allow you to dip into the pools of information out there without having to

invest all that money in buying books.

A sampling

For biomedical information:

1. Biological Treatments for Autism and PDD " by Dr. Shaw

2. " Children With Starving Brains " by Dr. Jacquelyn McCandless

For perspective from those on the Spectrum:

1. Songs of the Gorilla Nation by Dawn Prince-

2. Anything by Temple Grandin ( think she's written three, maybe now four

books)

3. The DVD " Define Me " and the book Reflections of Self by our own Sondra

Wiliams ( go to http://www.thegraycenter.org/sondrawilliams.cfm )

4. Blogs! Lots of 'em at http://www.autism-assembly.com/ Also our own

Kassiane's blog at http://rettdevil.blogspot.com/

For Applied Behavioral Analysis

Check out the listing of resources on this link

http://rsaffran.tripod.com/resources.html#program_info

And there are scores about education too

Can some members chime in here? Maybe we should start a list of resources

that we've felt are helpful?.

I guess most of all I want to reassure you that there is a lot of support

out there, there is far more available today than ever before in terms of

services and information, and that Autism is not a horrible tragedy. You are

going to learn so much and meet some incredible people on your journey, people

you

never would've had the good fortune of knowing if your family hadn't been

inducted into The Autism Club. We all want the world for our children, and it is

incredible hard to learn that there is something " not normal " about your

child, and you need to allow yourself to go through all the stages with this.

BUT,

.....your daughter is going to make you proud. She is going to amaze and

delight you. And you are going to discover things about yourself, your family,

and

the world at large that will strengthen and deepen you as a person.

So, welcome!

Peace,

Melinda

[Guest guest]

Thank you all for your warm " welcome " ....the emails and support I

have received in just a few days have put a smile on my face (and

not too much does these days)....

We have done the CF diet for 4 months and just took Jadyn off of it

and noticed no difference...but we went for Genetic Testing and now

we have to wait on the Fragile X results to know if we are dealing

with that and autism (its never easy...)

Can anyone comment if they have had the Fragile X come back positive

and how to deal with it on top of the autism...the geneticist highly

suspected Jadyn with some mental retardation too, but until the

tests are back, the jury is still out.

Thanks for all the recommendations on websites to visit and books to

read---i wish I had more free time to do all my research.

I am so lucky to have you all as my new cyber-autism support group!

[Guest guest]

>

> Hi ,

> Welcome. I am Massachusetts mother to a 13 year old daughter who is on

> the Autism spectrum and also has Obsessive Compulsive Disorder and a possible

> mitochondrial disorder. This group is great--I've been on several lists and in

> many groups and this one stands out for the nonjudgmentalism and the genuine

> caring support. I also hugely value the input of the members on the spectrum.

> Where to start? You know, years ago I would've been able to answer that

> more readily. There was less information out there, and far less controversy.

> Now there are these unfortunate divides, these " camps " that advocate one

> treatment over another, one approach over another, and it can be difficult to

know

> what to do. I would strongly recommend that you get in touch with your local

> Autism Center if you haven't already done so. Many have a lending library that

> can allow you to dip into the pools of information out there without having to

> invest all that money in buying books.

> A sampling

> For biomedical information:

> 1. Biological Treatments for Autism and PDD " by Dr. Shaw

> 2. " Children With Starving Brains " by Dr. Jacquelyn McCandless

>

> For perspective from those on the Spectrum:

> 1. Songs of the Gorilla Nation by Dawn Prince-

> 2. Anything by Temple Grandin ( think she's written three, maybe now four

> books)

> 3. The DVD " Define Me " and the book Reflections of Self by our own Sondra

> Wiliams ( go to http://www.thegraycenter.org/sondrawilliams.cfm )

> 4. Blogs! Lots of 'em at http://www.autism-assembly.com/ Also our own

> Kassiane's blog at http://rettdevil.blogspot.com/

>

> For Applied Behavioral Analysis

> Check out the listing of resources on this link

> http://rsaffran.tripod.com/resources.html#program_info

>

> And there are scores about education too

>

> Can some members chime in here? Maybe we should start a list of resources

> that we've felt are helpful?.

My favorite parent book is " Elijah's Cup " by Valarie Paradiz. " Ask and Tell "

(with a long

subtitle I never remember) was written by 6 autistic adults including me...it

has a lot on

teaching advocacy skills, teaching faces, including kids in their IEPs, building

allies, and

coming out as autistic (I always suggest this one but I don't get paid royalties

*grin*).

I also like the " Practical Solutions " series from AutismAsperger Publishing

Company...they

might be geared towards HFA/AS, but one never knows where their child will land.

There's more but I cant think of them right now (this is so bad, I have like 50

autism books

too...)

Kassiane

[Guest guest]

Welcome! I am glad you have joined the group. This group is very helpful

and has given me much advice.

Naidne

New to Forum

hi everyone...

I am new to this forum and wanted to introduce myself. I have a 2

yr old daughter, Jadyn who has been diagnosed with Classic Autism

and Sensory Integration Disorder and is non-verbal...its been quite

a long journey already. It seems every week there is a dr appt for

something or another. We are in EI and get 22 hrs of services each

week--DI, OT, ABA, PT, nutrition, and Speech---so we are really busy

as you can imagine.

I am really looking to meet some great new friends who can help me

and my daughter on this long adventure we have in front of us. Many

of the people who we thought were our " friends " have taken a step

back from us when we got the diagnosis--so much for friends....

I am seeking help, guidance, advice, and support from you wonderful

people---and anything I can learn--can only help Jadyn as she

grows. I live in Central New Jersey and am trying to now navigate

the school system and placement....so much to learn, so quickly.

Any initial help for those parents of newly diagnosed autistic

children? Where do I start to move on with this.......

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