New to group

[Guest guest]

Hi all,

I joined this group about a month ago and I am glad I did, I have

learned so much! I have been " lurking in the shadows,checking it all

out, but now have decided to introduce myself. My name is Joni, my

hubby is Dan, and our son Nick is 11 and has DS and PDD/Autism (mild,

as far as I can tell). I also have an adult daughter, , who is

married with 2 stepdaughters 20 and 16 and 2 sons, 5 and 1. I am

really just coming to terms with the autism, but I do see the signs.

He was dx'd at around 4 with PDD and then again a few years ago as

autistic. The Dr.'s actual word were: " if you went to 10 Dr.'s, 5

would say he is severely retarded, and the other 5 would say he is

autistic. Well, he is not " severely " retarded, so I guess the autism

label will have to fit.

Nick is in an inclusion class at our local school, with a 1:1 aide,

special ed consultant teacher. Therapies are: PT, OT, Speech, music,

and assistive tech. He is making the most progress this year that he

ever has.

Many of the issues talked about here are issues I thought were DS

related. Waking up and playing among others. Many of the posts are

so helpful. And I love the support you all give one another! Thanks

for being here!

Joni

[Guest guest]

Joni: Welcome to the list. Sounds like your school system is offering your

son some wonderful support.

We also went thru the :severely retarded " , PDD-NOS, ASD ride finally getting

the ASD dx when Elie was around 11.

What part of the world are you in? There may be other list mates nearby for

further support!!

In any case, you are welcome to lurk, or participate as you want. We would

love to hear Nick stories.

> Hi all,

> I joined this group about a month ago and I am glad I did, I have

> learned so much! I have been " lurking in the shadows,checking it all

> out, but now have decided to introduce myself. My name is Joni, my

> hubby is Dan, and our son Nick is 11 and has DS and PDD/Autism (mild,

> as far as I can tell). I also have an adult daughter, , who is

> married with 2 stepdaughters 20 and 16 and 2 sons, 5 and 1. I am

> really just coming to terms with the autism, but I do see the signs.

> He was dx'd at around 4 with PDD and then again a few years ago as

> autistic. The Dr.'s actual word were: " if you went to 10 Dr.'s, 5

> would say he is severely retarded, and the other 5 would say he is

> autistic. Well, he is not " severely " retarded, so I guess the autism

> label will have to fit.

> Nick is in an inclusion class at our local school, with a 1:1 aide,

> special ed consultant teacher. Therapies are: PT, OT, Speech, music,

> and assistive tech. He is making the most progress this year that he

> ever has.

> Many of the issues talked about here are issues I thought were DS

> related. Waking up and playing among others. Many of the posts are

> so helpful. And I love the support you all give one another! Thanks

> for being here!

> Joni

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Hi , Thanks for the welcome, We live in New York, northeast of

Albany, in Schuylerville.

Joni

>

> Joni: Welcome to the list. Sounds like your school system is

[Guest guest]

ECKI lives I believe in Sullivan County. There may be others up that way.

> Hi , Thanks for the welcome, We live in New York, northeast of

> Albany, in Schuylerville.

> Joni

>

> >

> > Joni: Welcome to the list. Sounds like your school system is

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Hi Amy

 

Welcome to the group.  My daughter, Amy is 5 and had infantile spasms for 8

months undetected. I took her to her ped about 6 times saying something is not

right with her and he never caught it.  She had open heart surgery at 4 months

and they started shortly after that so he kept saying that it was post traumatic

stress causing it.  I finally went online myself and joined the DS Yahoo Group

and sent a message out to them asking if anyone had experienced the same things

I was going through and got immediate responses that she needed to have an EEG

and see a neuroogical ped.  I went through our family doctor to get this done. 

She had the EEG 2 weeks later and 2 days later was diagnosed and put on

Vigabatrin or Sabril.  She started sitting up and smiling again within days.  It

was wonderful.  She was on the meds for 6 months and then we weaned her off of

them.  Then 2 months later she started having these little ticks or shivers and

was then

diagnosed myoclonic seizures and has been on valproic acid every since.  She

has nystagmus as well which gets really bad when she is tired or sick or having

morphine withdrawals (like now!!) but is otherwise not noticeable..  She does

some signs and PECs but is inconsistent with them.  She does like to yell out

but it is not distruptive as of right now so I can't help you on that one. 

Sorry.  You have joined a very good group!!

 

Ali, mom to Amy, 5 y/o today - DS, ASD, 3 and Olivia 2

Subject: New to group

To:

Received: Monday, April 27, 2009, 11:41 PM

Hi everyone. I am mom to a 5 yr. old son who has Ds/Autism. My son has a history

of Infantile Spasms/West syndrome as a baby which resolved with the use of ACTH.

Does anyone else have this history along with nystagmus and congenital

cataracts? Currently I am struggling the most with my son's communication

skills. He signs a lot, but he also yells A LOT!!! Any suggestions to deal w/

the yelling? We live in Wisconsin.

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