Re: New to the group/nonverbal communication/prayers and congratulations

[Guest guest]

Hi everyone,

I'd like to welcome all the newcomers too. This is a great group - so much

advice/experience, so generously shared - all those detailed answers take time

and I feel guilty that I don't answer more often myself, as life is complicated

for all of us!

Happy birthday to those who have just had a celebration. As I write this I'm

suddenly aware of what a beautiful word that is, and how we need to celebrate

our children for everything they give back to us. No-one can say our lives are

not interesting!

Prayers for those who are going through hard times - , who's fighting to get

better, Tori who's had an operation, and all the others in the weeks since I

last wrote. Like so many, I have to read every post, so know what everyone is

going through. You have all been in my thoughts.

Congratulations to Zeb, and to Wesley and all the others who are having success,

however big or small, and showing the world what can be done, and opening doors

for other young people with different abilities.

Desi, I felt for you when you wrote about Aubrey's report card and hope that

time and the great advice others gave you have helped put things in perspective.

However, I also think that when you've had time to 'digest' that bad experience

it's worth writing a letter to the teachers saying how badly-communicated

information can make you/us feel. At least it might help some of those who

receive the letter to think twice in the future, and save some other parents the

sadness of feeling our children are not valued for the amazing people they are.

All too often in the past I've just left things once my own anger/hurt has

subsided, but people need to be made aware that our children (and their parents)

feel things at least as strongly as everyone else.

As for the non-verbal aspect, I see that as he has got older Matteo has stopped

even trying to speak. He's very passive anyway, but he has been discouraged by

the fact of having to repeat over and over again - and even then not always

being understood. He gets by by letting others work out what he wants (and he's

very good at that!). He does write, so that helps, but my advice to parents of

young children is to find alternatives sure, but to try not to make life too

comfortable for them. We always say to Matteo that no-one expects long

conversations, but that we'll be happy with just one word (not that this

produces any great results!).

Does that cover everyone?? Thank you all for sharing your advice, your

information and your stories.

My love to you all.

, mum to Matteo,still 20 for another couple of weeks

________________________________

Da: " cathynash@... "

A:

Inviato: Sab 25 giugno 2011, 18:03:10

Oggetto: Re: New to the group/nonverbal communication

Welcome to all the newcomers.

The question of whether our kids will ever talk brings up how they see the world

and the mysterious way their brains work. If you have an opportunity, rent the

Temple Grandin movie by HBO with Danes - this gave me some insight to how

incredibly visual my son is and how much he can pick out visual detail, while

talking probably often sounds like " blah blah blah " . The books by Temple Grandin

are good too but the movie shows visually what she sees (and she also gives

commentary - which is really great to listen to).

So in order for our kids to learn to communicate (hopefully, but not necessarily

verbally) I think they need visual communication tools. Either sign language

(Darwyn loves the Signing Times dvd's by ) or with pictures. We

started with ASL, but it doesn't transition to the school system easily, so now

we primarily use the PECs system with a whole binder of little pictures. Even if

you don't use a system, you can collect pictures of your kids favourite things

and they can choose what they want to start getting the idea that communicating

just might be worth the effort if it gets them something good.

When Darwyn was 4 he just threw the pictures, but at age 5 we hired someone with

PECs training and now at age 7 he will often choose the pictures AND sign AND

make a verbal noise all at the same time. Seems to me the signing and pictures

prompt the attempts to talk. We're thinking of trying proloqou2go, but Darwyn

tends to stim on computers, pressing buttons repeatedly without ever showing it

to another person, whereas with PECs he knows he has to hand the " talking strip "

to a person to make a request.

Just some ideas I had on talking vs communication, but I hope they're helpful.

,

Mom to (age 11) and Darwyn ( age 7 DS ASD and a few heart surgeries)

, Canada

Sent on the TELUS Mobility network with BlackBerry

New to the group

Hi All,

I am new to this group. My son, Sid (Siddhartha) will turn 4 tomorrow.

He has Down Syndrome and has just been unofficially diagnosed with Autism.

As I am sure is the case with everyone else, a lot of his delays were

attributed to DS, which seems to be an all-pervasive label for anything that

is wrong with him. It is only in the last month that I suspected autism, and

when I asked his SLT and OT, they confirmed that suspicion.

As I do more research, it is clear that Sid is quite autistic, and we

just didn't know. He is non-verbal, and non-communicative. His gross motor

skills are decent, though his fine-motor could use some help.

I am thrilled to have found this group, and even more thrilled that it

has this large group of members. Is it very common to have language delays

in this group of kids? Do we have any kids that talk? I am really not sure

what hope to hold out for his future. I feel put back to the day that Sid

was born and I learned of his extra chromosome. In the days that followed I

have never once regretted the Trisomy, but now I am not sure what to expect

any more.

Well, this is a long message already. I had just wanted to say " Hello

Everybody " !

Regards,

Vaish (mom to Sid, 4)

[Guest guest]

, is this the Matteo that was photographed in the Disability Solutions

issue on DS-autism? If so, my goodness, it's been years!

If that's not the one, then please fill us in a little more. (My recall is

worthless these days with over 1300 members... sorry!)

Beth

Pete's (AKA Ben) Mum

PS And when is Matteo's 21st BD? Pete's is coming in in a little over three

weeks, also... the 20th.

>

> Hi everyone,

>

> I'd like to welcome all the newcomers too. This is a great group - so much

> advice/experience, so generously shared - all those detailed answers take time

> and I feel guilty that I don't answer more often myself, as life is

complicated

> for all of us!

>

> Happy birthday to those who have just had a celebration. As I write this I'm

> suddenly aware of what a beautiful word that is, and how we need to celebrate

> our children for everything they give back to us. No-one can say our lives are

> not interesting!

>

> Prayers for those who are going through hard times - , who's fighting to

get

> better, Tori who's had an operation, and all the others in the weeks since I

> last wrote. Like so many, I have to read every post, so know what everyone is

> going through. You have all been in my thoughts.

>

> Congratulations to Zeb, and to Wesley and all the others who are having

success,

> however big or small, and showing the world what can be done, and opening

doors

> for other young people with different abilities.

>

> Desi, I felt for you when you wrote about Aubrey's report card and hope that

> time and the great advice others gave you have helped put things in

perspective.

> However, I also think that when you've had time to 'digest' that bad

experience

> it's worth writing a letter to the teachers saying how badly-communicated

> information can make you/us feel. At least it might help some of those who

> receive the letter to think twice in the future, and save some other parents

the

> sadness of feeling our children are not valued for the amazing people they

are.

> All too often in the past I've just left things once my own anger/hurt has

> subsided, but people need to be made aware that our children (and their

parents)

> feel things at least as strongly as everyone else.

>

> As for the non-verbal aspect, I see that as he has got older Matteo has

stopped

> even trying to speak. He's very passive anyway, but he has been discouraged by

> the fact of having to repeat over and over again - and even then not always

> being understood. He gets by by letting others work out what he wants (and

he's

> very good at that!). He does write, so that helps, but my advice to parents of

> young children is to find alternatives sure, but to try not to make life too

> comfortable for them. We always say to Matteo that no-one expects long

> conversations, but that we'll be happy with just one word (not that this

> produces any great results!).

>

> Does that cover everyone?? Thank you all for sharing your advice, your

> information and your stories.

>

> My love to you all.

>

> , mum to Matteo,still 20 for another couple of weeks

>

>

>

>

>

>

>