Re: Is anybody out there?

October 4, 2001

Hello

I happened to open your message while my husband was home. While he was reading

this he commented that this sounded just like our son Josh. He is 8 years old

and your description of your son fits ours to a T. Even down to the attention to

coloring and rewinding videos running away and finger chewing. I really am

surprised how much alike they sound from your brief description.

About 2 years ago he was on Ritalin and it only seemed to work part of the time

too. He is now on Dexedrine with much more even results, our pediatrician said

that kids with Down syndrome respond better to this than Ritalin. He was

diagnosed with ADHD officially last April. We are still waiting for an

assessment to diagnose autism, but we all believe this is also something we need

to seriously look at.

Since he has been on the Dexedrine he is sleeping ad eating better. Both were

disrupted while on the Ritalin.

I am not sure that I am much help other than to listen, but know that you are

his best advocate and know him better than anyone. My first clue was just seeing

him with other kids with Ds. He is definitely not like them . I see the unusual

behaviours come out even more then.

We have a great doctor who works with children with Down syndrome so she was the

one who mentioned autism before I was able to bring it up to her. We were

visiting to discuss ADHD, which she also believes is something our kids can also

exhibit. I suggest you keep on trying. There is a website

www.altonweb.com/cs/downsyndrome click on medical series and there is a section

on autism in kids with down syndrome. It is very helpful in describing

behaviours etc.

This group is also a good place to start. I don't get much chance to post but

have learned a great deal from reading other posts.

Good luck in your search for answers and welcome to the group. Ask all the

questions you need till you get all the answers you need to help your son.

is anybody out there?

Ok, I'm not the best with this list/serve stuff so I hope someone out

there can hear me. You may have already gotten this but here

goes...I am inquiring in regard to my nine year old son Jon who has

Down Syndrome. I think he may also have mild autism. Let me fill

you in on some of his behaviors: he chews his finger, is very

impulsive(will take off, particularly at school when he is having a

rough day, very hard time focusing, fascination with flashlights,

prefers to play alone, listens to music (a lot), gets fixated on

things and in next to impossible to distract with something else,

wants things done the same way every time, complains about noise and

crowds but listens to the t.v. and radio at full blast, has a hard

time sitting still, limited interests, awake and ready to go between

5 and 6Am everyday, doesn't sleep well, will spend blocks of time

looking at photos, rewinds favorite part of videos over and over....

Has anyone seen anything else like these behaviors? He is really

struggling at school and his behaviors are very problematic. They

are having a negative impact on his cognitive development. The

psychiatrist that we are seeing was reluctant to even make a

diagnosis of ADHD,but there is no doubt in my mind that Jon is ADHD.

His nurses keep telling me that " these kiddos " just go through this.

But I don't think so...I have thought since he was very young that he

is wired differently and that we are missing something. He used to

climb all over me-constant motion. He is verbal but doesn't really

have conversations. He has become agitated and aggressive as of late.

The Dr. put him on ritalin last spring. Initially he became extremely

focused...in fact he colored and drew all summer long. It was tough

to prey him away from it. By the close of summer he was not as

focused and now I'm not sure the Ritalin is doing anything. His

behaviors seem to have cycles.

I hope someone hears me. We could really use some help.

October 5, 2001

In a message dated 10/4/01 2:58:12 PM Pacific Daylight Time,

naylorj@... writes:

> Ok, I'm not the best with this list/serve stuff so I hope someone out

> there can hear me. You may have already gotten this but here

> goes...I am inquiring in regard to my nine year old son Jon who has

> Down Syndrome. I think he may also have mild autism. Let me fill

> you in on some of his behaviors: he chews his finger, is very

> impulsive(will take off, particularly at school when he is having a

> rough day, very hard time focusing, fascination with flashlights,

> prefers to play alone, listens to music (a lot), gets fixated on

> things and in next to impossible to distract with something else,

> wants things done the same way every time, complains about noise and

> crowds but listens to the t.v. and radio at full blast, has a hard

> time sitting still, limited interests, awake and ready to go between

> 5 and 6Am everyday, doesn't sleep well, will spend blocks of time

> looking at photos, rewinds favorite part of videos over and over....

>

Hi, My age 10, does all of these things, with the exception of not

sleeping...he has no problem with sleeping at all, and he has never taken

off...but everything else you have mentioned he does. Is your son aggressive

toward you, as in hitting? My hits..

Debbie - NY

October 6, 2001

oh yes nathan still will do the repetetive rewinding

of videos or his tapes from the disablity library, he

use to bite up his arms and us often, but hasnt done a

bout of this for a good year now. Transitions are

very hard for most of our kids, we use fav item or toy

for the day, this has taken years of behavior

management and consistency wit school and home to do.

shawna.

--- naylorj@... wrote:

> Ok, I'm not the best with this list/serve stuff so I

> hope someone out

> there can hear me. You may have already gotten this

> but here

> goes...I am inquiring in regard to my nine year old

> son Jon who has

> Down Syndrome. I think he may also have mild

> autism. Let me fill

> you in on some of his behaviors: he chews his

> finger, is very

> impulsive(will take off, particularly at school when

> he is having a

> rough day, very hard time focusing, fascination with

> flashlights,

> prefers to play alone, listens to music (a lot),

> gets fixated on

> things and in next to impossible to distract with

> something else,

> wants things done the same way every time, complains

> about noise and

> crowds but listens to the t.v. and radio at full

> blast, has a hard

> time sitting still, limited interests, awake and

> ready to go between

> 5 and 6Am everyday, doesn't sleep well, will spend

> blocks of time

> looking at photos, rewinds favorite part of videos

> over and over....

>

> Has anyone seen anything else like these behaviors?

> He is really

> struggling at school and his behaviors are very

> problematic. They

> are having a negative impact on his cognitive

> development. The

> psychiatrist that we are seeing was reluctant to

> even make a

> diagnosis of ADHD,but there is no doubt in my mind

> that Jon is ADHD.

> His nurses keep telling me that " these kiddos " just

> go through this.

> But I don't think so...I have thought since he was

> very young that he

> is wired differently and that we are missing

> something. He used to

> climb all over me-constant motion. He is verbal but

> doesn't really

> have conversations. He has become agitated and

> aggressive as of late.

>

> The Dr. put him on ritalin last spring. Initially he

> became extremely

> focused...in fact he colored and drew all summer

> long. It was tough

> to prey him away from it. By the close of summer he

> was not as

> focused and now I'm not sure the Ritalin is doing

> anything. His

> behaviors seem to have cycles.

>

> I hope someone hears me. We could really use some

> help.

>

__________________________________________________

February 23, 2002

Machelle there's not much in the way of E-mails going

on in the group on the weekend.

Terry

--- Machelle <catkrazy@...> wrote:

> Where is everyone today??? Am I the only one

> sitting at home??

> I guess I am going to sleep the day away until my

> hubby gets home...

> Until then....zzzzzzzz

>