Re: Hello!

[Guest guest]

Hi n,

Welcome aboard, never an off-topic. What you have shared here are

exactly typical experiences some of us parents have undergone and also

begin following what our hearts or guts tells us.

Please consider that you have identified some of the culprits of the

challenges thrown our way which is a Blessing due to your son being

young and could now look forward towards having options of what

therapies or interventions to work around the issues that could be

addressed.

My son is 20 y/o, dx'd at 13 y/o, missed out on so much during his

early years but back then there was not alot of resource information

as there are today.

You will read many posting here and can probably relate to it, you are

not alone on this mission, together we are learning or just lending a

shoulder to lean on.

It is a hurdle of us parents having to go through this of now learning

another diagnosis of the autism spectrum. We are right along with you

and understand these feelings.

Welcome aboard once again.

Irma,20,DS/ASD

>

> My name is n. I am new to the group, I am the mother of Stu age

> 5. He has down syndrome

> and today his doctor told me he believes he is also autistic. I know

> this is true 2 other doctors have told me this since he was about 18

> months old and for some reason today it has finally sunk in. Forgive

> me, if this is lengthy it has been a long week.

> I work in the lab in a local hospital. I started my week being

> " warned " by a nurse that a patient I had to draw blood from was

> " retarded " . So, I had to tackle that issue. I don't know if I changed

> the thinking of the nurse with the problem, but I did print up some

> information from the ARC website and passed it around to various

> supervisors, one of them printed some quotes in an e-mail that was

> sent in the hospital, so I like to think I changed someone.

> Then today I took Stu to a new Dr. because I felt I needed some

> direction due to behavioral issues at the end of our visit she said

> she felt Stu was autistic. She wanted to refer him to a doctor that

> has already said she wanted to diagnose him with autism two years ago,

> but I couldn't accept it then. So today I have.I started researching

> autism online and I feel like I have failed him for not accepting it

> sooner.

> One thing I have noticed tonight is that Stu has not changed. He is th

> e same great kid he was before we saw the Dr. Everyone who knows him

> loves him. So tonight I cannot sleep. I am wondering why words hurt so

> much. He has not changed and I believe he really doesn't care what you

> call him.He's happy and I love him.

> I know this is off topic but has anyone ever felt just " lost " . I

> started this journey learning about down syndrome now I am learning

> about autism, and at the end of this road I may just be a doctor

> myself (Ha!)

> Thank you for reading (or listening)

> n

>

[Guest guest]

Yes, I have to look at this in a postive way. I have noticed he

responds better in individual therapy sessions verses group. When he

left individual therapy at age 3 to classroom at the MRDD he went

backwords and lost skills. This summer I was able to get him back

into individual sessions The improvement was dramatic. Now that the

school year has started he is back in classroom he no longer gets the

individual therapy. Last year I went to the MRDD to discuss his

backslide and was told it was because he was new. This year I brought

up his improvement over the summer and it fell on deaf ears.I was

told he could not have individual therapy due to lack of resources.

So I am going to use this diagnosis as a tool to help get him what he

needs, and do the best I can to push away all the junk that gets me

upset. Thanks for your reply.

> >

> > My name is n. I am new to the group, I am the mother of Stu

age

> > 5. He has down syndrome

> > and today his doctor told me he believes he is also autistic. I

know

> > this is true 2 other doctors have told me this since he was about

18

> > months old and for some reason today it has finally sunk in.

Forgive

> > me, if this is lengthy it has been a long week.

> > I work in the lab in a local hospital. I started my week being

> > " warned " by a nurse that a patient I had to draw blood from was

> > " retarded " . So, I had to tackle that issue. I don't know if I

changed

> > the thinking of the nurse with the problem, but I did print up

some

> > information from the ARC website and passed it around to various

> > supervisors, one of them printed some quotes in an e-mail that

was

> > sent in the hospital, so I like to think I changed someone.

> > Then today I took Stu to a new Dr. because I felt I needed some

> > direction due to behavioral issues at the end of our visit she

said

> > she felt Stu was autistic. She wanted to refer him to a doctor

that

> > has already said she wanted to diagnose him with autism two years

ago,

> > but I couldn't accept it then. So today I have.I started

researching

> > autism online and I feel like I have failed him for not accepting

it

> > sooner.

> > One thing I have noticed tonight is that Stu has not changed. He

is th

> > e same great kid he was before we saw the Dr. Everyone who knows

him

> > loves him. So tonight I cannot sleep. I am wondering why words

hurt so

> > much. He has not changed and I believe he really doesn't care

what you

> > call him.He's happy and I love him.

> > I know this is off topic but has anyone ever felt just " lost " . I

> > started this journey learning about down syndrome now I am

learning

> > about autism, and at the end of this road I may just be a doctor

> > myself (Ha!)

> > Thank you for reading (or listening)

> > n

> >

>

[Guest guest]

n-

I am a single Mommy to Aubrey 10, dstr21, Hearing Impaired and now officially

diagnosed as PDDNOS, which we've been told is-

a " mild " form of autism.

Aubrey was diagnosed almost a year ago now. Wow!

A whole year has gone by?!

Acceptance does not come overnight. It is an ongoing process. Processing the

emotion that comes with acceptance cannot be forced or expected to happen-any

faster than your mind and heart can do it.

I, too, was and still, am often overwhelmed by everything there is to learn

about Aubrey's third diagnosis.

HOWEVER, I now realistically make my best effort to learn a little bit every

day. Guilt is such a waste of our so-needed energy! Please don't " beat yourself

up " about what you think you " should have done "

in the past. You need your strength for today and tomorrow...

Doing the best that you CAN do on any one given day HAS to be enough.

I, too focus on the fact that Aubrey truly is the same beautiful,

loving child that she was before the third diagnosis was confirmed.

I focus as well on the gains that she makes each and every day because we now

understand a little more about " why " she is so unique.

The greatest thing is that her new diagnosis has brought in additional team

members and resources at her school that are going to help her and our family so

much.

One day at a time. One hour at a time if you need to.

And don't forget to love YOURSELF, too! You're a great Mommy!

Malama pono, (take good care)

Desi McKenzie

Mililani, Hi

Subject: Hello!

To:

Date: Thursday, October 2, 2008, 6:49 PM

My name is n. I am new to the group, I am the mother of Stu age

5. He has down syndrome

and today his doctor told me he believes he is also autistic. I know

this is true 2 other doctors have told me this since he was about 18

months old and for some reason today it has finally sunk in. Forgive

me, if this is lengthy it has been a long week.

I work in the lab in a local hospital. I started my week being

" warned " by a nurse that a patient I had to draw blood from was

" retarded " . So, I had to tackle that issue. I don't know if I changed

the thinking of the nurse with the problem, but I did print up some

information from the ARC website and passed it around to various

supervisors, one of them printed some quotes in an e-mail that was

sent in the hospital, so I like to think I changed someone.

Then today I took Stu to a new Dr. because I felt I needed some

direction due to behavioral issues at the end of our visit she said

she felt Stu was autistic. She wanted to refer him to a doctor that

has already said she wanted to diagnose him with autism two years ago,

but I couldn't accept it then. So today I have.I started researching

autism online and I feel like I have failed him for not accepting it

sooner.

One thing I have noticed tonight is that Stu has not changed. He is th

e same great kid he was before we saw the Dr. Everyone who knows him

loves him. So tonight I cannot sleep. I am wondering why words hurt so

much. He has not changed and I believe he really doesn't care what you

call him.He's happy and I love him.

I know this is off topic but has anyone ever felt just " lost " . I

started this journey learning about down syndrome now I am learning

about autism, and at the end of this road I may just be a doctor

myself (Ha!)

Thank you for reading (or listening)

n

[Guest guest]

I felt the same way, n. Welcome. My son with DS is 8 and was diagnosed with

autism after leukemia treatment at age 7. By the time we got the diagnosis, I

really suspected it anyway. My first reaction was " so what? " was still

, and he already had lots of therapies and had had early intervention

therapies too, and he was alive and with us after cancer treatment, so I just

really felt like is no matter what. I have learned more about autism,

but his therapies haven't changed much. I did get him on a med that helped some

issues he was having, and it led to better testing at school and just more

understanding of his issues. So overall it was a good thing to know, plus I have

met the lovely people here on this list. I too feel like a doctor, especially

after 's 4 years of leukemia treatment plus the disabilities. Every now and

then I feel sad he has all these issues, certainly more than his share, but

mostly I just focus on is . As the Signing Time says, wil

do what will do when is ready to do it.

Welcome to this list. I'm sure I'm a little odd in all this and you'll hear

other perspectives. Childhood cancer really changes your mind and heart as a

parent in ways that are hard to explain, but it makes you have kind of a wacky

but positive outlook.

Beth

Hello!

My name is n. I am new to the group, I am the mother of Stu age

5. He has down syndrome

and today his doctor told me he believes he is also autistic. I know

this is true 2 other doctors have told me this since he was about 18

months old and for some reason today it has finally sunk in. Forgive

me, if this is lengthy it has been a long week.

I work in the lab in a local hospital. I started my week being

" warned " by a nurse that a patient I had to draw blood from was

" retarded " . So, I had to tackle that issue. I don't know if I changed

the thinking of the nurse with the problem, but I did print up some

information from the ARC website and passed it around to various

supervisors, one of them printed some quotes in an e-mail that was

sent in the hospital, so I like to think I changed someone.

Then today I took Stu to a new Dr. because I felt I needed some

direction due to behavioral issues at the end of our visit she said

she felt Stu was autistic. She wanted to refer him to a doctor that

has already said she wanted to diagnose him with autism two years ago,

but I couldn't accept it then. So today I have.I started researching

autism online and I feel like I have failed him for not accepting it

sooner.

One thing I have noticed tonight is that Stu has not changed. He is th

e same great kid he was before we saw the Dr. Everyone who knows him

loves him. So tonight I cannot sleep. I am wondering why words hurt so

much. He has not changed and I believe he really doesn't care what you

call him.He's happy and I love him.

I know this is off topic but has anyone ever felt just " lost " . I

started this journey learning about down syndrome now I am learning

about autism, and at the end of this road I may just be a doctor

myself (Ha!)

Thank you for reading (or listening)

n

[Guest guest]

Hi, I'm Ecki, mom to four year old Kayla. She was diagnosed with autism

at age 3.

It's weird, your kids don't change with a new label, and really our

perceptions of them don't really change because we've lived with it way

before the " official " diagnosis, but it still hurts like hell when

those words come out of the doctor's mouth.

Keep on researching. Down syndrome is so easy compared to Autism.

Researching that makes my head hurts. There's just so many opinions,

strategies, therapies, nutritional interventions, etc. with autism. But

eventually you'll find what works best for your family.

Anyway, I just loved the way you were writing about the R word and then

wondering why words hurt so much after getting the autism diagnosis.

That was so insightful. Do you have a blog? You should, you write

wonderfully.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

[Guest guest]

HI! This is Leilani,

I wasnt sure if you were responding to my " hello " or someone elses, it is hard

to tell because, I too have written about the subjects you mentioned.  If you

were referring to me, thank you.  I thought about blogging, but Im not as

computer literate as I would like to believe, so I wouldnt know where to begin. 

Well, take care, Leilani

Re: Hello!

Hi, I'm Ecki, mom to four year old Kayla. She was diagnosed with autism

at age 3.

It's weird, your kids don't change with a new label, and really our

perceptions of them don't really change because we've lived with it way

before the " official " diagnosis, but it still hurts like hell when

those words come out of the doctor's mouth.

Keep on researching. Down syndrome is so easy compared to Autism.

Researching that makes my head hurts. There's just so many opinions,

strategies, therapies, nutritional interventions, etc. with autism. But

eventually you'll find what works best for your family.

Anyway, I just loved the way you were writing about the R word and then

wondering why words hurt so much after getting the autism diagnosis.

That was so insightful. Do you have a blog? You should, you write

wonderfully.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids .blogspot. com/

[Guest guest]

Ecki, Leilani again, just realized you weren't referring to me. (hee, hee: color

me embarrassed) Take care, Leilani

Re: Hello!

Hi, I'm Ecki, mom to four year old Kayla. She was diagnosed with autism

at age 3.

It's weird, your kids don't change with a new label, and really our

perceptions of them don't really change because we've lived with it way

before the " official " diagnosis, but it still hurts like hell when

those words come out of the doctor's mouth.

Keep on researching. Down syndrome is so easy compared to Autism.

Researching that makes my head hurts. There's just so many opinions,

strategies, therapies, nutritional interventions, etc. with autism. But

eventually you'll find what works best for your family.

Anyway, I just loved the way you were writing about the R word and then

wondering why words hurt so much after getting the autism diagnosis.

That was so insightful. Do you have a blog? You should, you write

wonderfully.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids .blogspot. com/

[Guest guest]

ROFL! I think you're a great writer, too. I love reading your posts.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

>

> Ecki, Leilani again, just realized you weren't referring to me. (hee,

hee: color me embarrassed) Take care, Leilani

>

>

>

[Guest guest]

Thanks. :-)

Re: Hello!

ROFL! I think you're a great writer, too. I love reading your posts.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids .blogspot. com/

>

> Ecki, Leilani again, just realized you weren't referring to me. (hee,

hee: color me embarrassed) Take care, Leilani

>

>

>

[Guest guest]

Dear n,

I too just joined this group and am also going through the lost feeling of

realizing that my lovely little boy 41/2 is not just " quirky " as we've described

him for the last year, but in fact probably autistic (I'm still flirting with

denial as we await diagnostic tests).  Over a year ago my husband was looking at

a DS-ASD website on the internet and he said " Hey this sounds like Darwyn " and I

told him that he was being ridiculous. At the time, we were going through our

son's 3rd heart surgery so I think I just wasn't yet ready to contemplate

anything else.  (just an aside that when our speech therapist mentioned ASD, my

first thought was: his dad will be so pleased at having been right a year before

all the medical crowd - made me kind of want to laugh and cry).   

So yes you are right that your son hasn't changed, but what I'm realizing is

that my hopes for him have now changed and although I've gotten pretty good at

the stages of grieving (after 3 times being told he'll need heart surgery I have

a pattern of denial, anger, and chocolate eating, that is somewhat comforting),

I feel like some of my hopes are lying low while I get over my ignorance and

fear.  (same as when we first found out about his having DS, except there is

more reading and less confirmed knowledge) 

I will say that I felt like a bit of an idiot for ignoring the signs so well.  I

think I just thought that life couldn't throw anything more at our boy, so the

increasing lack of eye contact and definite need for routine as well as his

increased inability to adapt to new crowded places, just was factored under

" quirk " for a long time. Not to mention the need to clear all table tops and the

fascination with light patterns.  I also felt like an idiot because i had read

articles on autism and even the novel " the Curious Incident of the Dog in the

Night time " and only a few weeks earlier a Mom I met whose child had autism has

said to me that she sometimes wished her child was more visibly different so

others wouldn't expect typical behaviours.  And I remember thinking how glad I

was that my child had DS and not autism because autism seemed much more

daunting.  And in one of those life jokes God likes to play I have now firsthand

realized that it is more daunting and I reminisce about the days when there was

only DS and heart surgery to contend with.  So in short - yes- there is that

lost feeling.  At first I felt I had to do something drastic and immediate, but

I've decide that our son is getting good services through his pre-school and his

teachers have adapted to his probable ASD diagnosis so I'm going to slowly come

to grips with this but that doesn't mean I haven't signed up for this group, got

too many books from the library, cried lots and spent too long on the

internet.   This is long, but I think I needed to get it all out - thanks for 

being a catalyst for me.

Hello!

To:

> My name is n. I am new to the group, I am the mother of Stu

> age

> 5. He has down syndrome

> and today his doctor told me he believes he is also autistic. I

> know

> this is true 2 other doctors have told me this since he was

> about 18

> months old and for some reason today it has finally sunk in.

> Forgive

> me, if this is lengthy it has been a long week.

> I work in the lab in a local hospital. I started my week being

> " warned " by a nurse that a patient I had to draw blood from was

> " retarded " . So, I had to tackle that issue. I don't know if I

> changed

> the thinking of the nurse with the problem, but I did print up

> some

> information from the ARC website and passed it around to various

> supervisors, one of them printed some quotes in an e-mail that

> was

> sent  in the hospital, so I like to think I changed someone.

> Then today I took Stu to a new Dr. because I felt I needed some

> direction due to behavioral issues at the end of our visit she

> said

> she felt Stu was autistic. She wanted to refer him to a doctor

> that

> has already said she wanted to diagnose him with autism two

> years ago,

> but I couldn't accept it then. So today I have.I started

> researching

> autism online and I feel like I have failed him for not

> accepting it

> sooner.

> One thing I have noticed tonight is that Stu has not changed. He

> is th

> e same great kid he was before we saw the Dr. Everyone who knows

> him

> loves him. So tonight I cannot sleep. I am wondering why words

> hurt so

> much. He has not changed and I believe he really doesn't care

> what you

> call him.He's happy and I love him.

> I know this is off topic but has anyone ever felt just " lost " . I

> started this journey learning about down syndrome now I am

> learning

> about autism, and at the end of this road I may just be a doctor

> myself (Ha!)

> Thank you for reading (or listening)

> n

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

> ------------------------------------

>

> --------------------------------------------------

> Checkout our homepage for information, bookmarks,

> and photos of our kids. Share favorite bookmarks, ideas, and

> other information by including them. Don't forget, messages are

> a permanent record of the archives for our list.

> http://groups.yahoo.com/group/

> --------------------------------------------

[Guest guest]

Hi !

Thanks for the reply. Hope your son is doing well. Never been in a support group

before and I am glad I joined. I read your son likes to clear table tops. So

does Stu it was one of the issues that sent me on this road. On a lighter note

my kitchen counters have never been so clean. He can reach up and knock stuff

off of them too. I did not know this could be part of the Autism . We are still

in the middle of diagnosis too. He cant get in to the next specialist until

01/09, so we wait. Now that we have cleared the hurdle of accepting there could

be something else contributing to his behavior, I am looking forward to finding

ways to work with it and hopefully stop some things. I am looking forward to

being able to have houseplants and other knick-knacks on my table tops again.

Baby steps!

n

P.S.. Havent hit the chocolate yet , but I did enjoy 1/2 can of frosting the

other day. Much too my 13 yr " typical " daughters dismay, for that completed

ruined her cake plan. Kids can be cruel but they can also be great, when I tried

to explain to her why I was upset she thought I was nuts. She just loves Stu,

he's her brother and thats it. The drs can say whatever they want she dont care.

I'm working hard to incorporate some of her attitude into my day.

Hello!

To: @yahoogrou ps.com

> My name is n. I am new to the group, I am the mother of Stu

> age

> 5. He has down syndrome

> and today his doctor told me he believes he is also autistic. I

> know

> this is true 2 other doctors have told me this since he was

> about 18

> months old and for some reason today it has finally sunk in.

> Forgive

> me, if this is lengthy it has been a long week.

> I work in the lab in a local hospital. I started my week being

> " warned " by a nurse that a patient I had to draw blood from was

> " retarded " . So, I had to tackle that issue. I don't know if I

> changed

> the thinking of the nurse with the problem, but I did print up

> some

> information from the ARC website and passed it around to various

> supervisors, one of them printed some quotes in an e-mail that

> was

> sent  in the hospital, so I like to think I changed someone.

> Then today I took Stu to a new Dr. because I felt I needed some

> direction due to behavioral issues at the end of our visit she

> said

> she felt Stu was autistic. She wanted to refer him to a doctor

> that

> has already said she wanted to diagnose him with autism two

> years ago,

> but I couldn't accept it then. So today I have.I started

> researching

> autism online and I feel like I have failed him for not

> accepting it

> sooner.

> One thing I have noticed tonight is that Stu has not changed. He

> is th

> e same great kid he was before we saw the Dr. Everyone who knows

> him

> loves him. So tonight I cannot sleep. I am wondering why words

> hurt so

> much. He has not changed and I believe he really doesn't care

> what you

> call him.He's happy and I love him.

> I know this is off topic but has anyone ever felt just " lost " . I

> started this journey learning about down syndrome now I am

> learning

> about autism, and at the end of this road I may just be a doctor

> myself (Ha!)

> Thank you for reading (or listening)

> n

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

> ------------ --------- --------- ------

>

> ------------ --------- --------- --------- --------- --

> Checkout our homepage for information, bookmarks,

> and photos of our kids. Share favorite bookmarks, ideas, and

> other information by including them. Don't forget, messages are

> a permanent record of the archives for our list.

> http://groups. yahoo.com/ group/ds- autism

> ------------ --------- --------- --------- -----

[Guest guest]

n, I thought I'd share one of the first websites I found because its about

the quirky behaviours of a little boy with DS and ASD and reading them I just

clicked and knew that my son had both too.

http://uk.geocities.com/grahamdavidcookbtinternet/behaviour.htm

I like it because its not all medical and somehow that's what I was looking

for.  I think one of the benefits of knowing is that we don't try anymore to

make Darwyn do things that are overwhelming.  We shop without him as much as

possible and we have people over to our home instead of going to their's. 

Darwyn will walk up and notice them and then disappear to watch Signing Time

DVD's in his bedroom.  We used to bring him out to join us, but now we realize

it really is too overstimulating. 

Your daughter sounds great - my daughter (age 8) feels the same way.  She makes

up all these games to play with Darwyn and just works with whatever he can do. 

She's also the best ASL signer in the house from watching all his DVDs' with

him.

take care,

Hello!

> To: @yahoogrou ps.com

>

> > My name is n. I am new to the group, I am the mother of

> Stu

> > age

> > 5. He has down syndrome

> > and today his doctor told me he believes he is also autistic.

> I

> > know

> > this is true 2 other doctors have told me this since he was

> > about 18

> > months old and for some reason today it has finally sunk in.

> > Forgive

> > me, if this is lengthy it has been a long week.

> > I work in the lab in a local hospital. I started my week being

> > " warned " by a nurse that a patient I had to draw blood from

> was

> > " retarded " . So, I had to tackle that issue. I don't know if I

> > changed

> > the thinking of the nurse with the problem, but I did print up

> > some

> > information from the ARC website and passed it around to

> various

> > supervisors, one of them printed some quotes in an e-mail that

> > was

> > sent  in the hospital, so I like to think I changed someone.

> > Then today I took Stu to a new Dr. because I felt I needed

> some

> > direction due to behavioral issues at the end of our visit she

> > said

> > she felt Stu was autistic. She wanted to refer him to a doctor

> > that

> > has already said she wanted to diagnose him with autism two

> > years ago,

> > but I couldn't accept it then. So today I have.I started

> > researching

> > autism online and I feel like I have failed him for not

> > accepting it

> > sooner.

> > One thing I have noticed tonight is that Stu has not changed.

> He

> > is th

> > e same great kid he was before we saw the Dr. Everyone who

> knows

> > him

> > loves him. So tonight I cannot sleep. I am wondering why words

> > hurt so

> > much. He has not changed and I believe he really doesn't care

> > what you

> > call him.He's happy and I love him.

> > I know this is off topic but has anyone ever felt just " lost " .

> I

> > started this journey learning about down syndrome now I am

> > learning

> > about autism, and at the end of this road I may just be a

> doctor

> > myself (Ha!)

> > Thank you for reading (or listening)

> > n

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >  

> >

> >

> > ------------ --------- --------- ------

> >

> > ------------ --------- --------- --------- --------- --

> > Checkout our homepage for information, bookmarks,

> > and photos of our kids. Share favorite bookmarks, ideas, and

> > other information by including them. Don't forget, messages

> are

> > a permanent record of the archives for our list.

> > http://groups. yahoo.com/ group/ds- autism

> > ------------ --------- --------- --------- -----