Re: New to the group-Vaish

[Guest guest]

Greetings Vaish!

Heart hugs & welcome to this group. You will find much of value here & sometimes

things to laugh about.

About your communication question. Try to keep in mind that it is impossible to

predict how much or what form of communication our kiddos will exhibit. Mainly

because no two beings are alike but also because it depends on so many factors.

That being said, I personally support surrounding a child with a total

communication enivironment. Throughout life.

Many opinions out there about communication training which can be confusing or

daunting. What I have found most helpful for the parents of the kiddos I used

to serve & in my own life is to use approaches that are realistically do-able in

the home, use these approaches across all enivrons AND to use approaches that

are individualized to the child's strengths & needs.

When I use the term " Total Communication " I basically mean using several forms

of communication which includes receptive & expressive language building. The

easiest & most immediate are signs (baby sign language-singular words),verbal

labeling & photos/objects.

The progression depends upon the child's skill sets but usually includes PECS,

sign language, augementative communication devices & verbalizations.

My child, DJ, is now 16. When I became his mama, he was 28 months old & had no

words & very very few babbling sounds. He did not point or hug or kiss or

actually cry very often. In a nutshell, he had almost zero expressive language

skills.

What added to his communication difficulties ( & still does) is that according to

the ENT my child had not heard any sounds for months- if ever- due to occluded

hearing. My child also was chronically congested & had very very weak muscle

tone that impacted his gross & fine motor skills.

Fine & gross motor abilities greatly impact eating & speech. So does being able

to hear. So to try to " catch up " & to optimize his language acquisition, I

surrounded him with sounds, with constant labeling of the sounds or objects or

events. I taught him baby signs (ASL)for things that were extremely meaningful

to him. (Heh, like the sign for " chip " & " drink " & 'more " & " play " -he aced

those fast)

During his Pre-K years, he was bombarded-everywhere-with language in some form.

I actually took polaroid photos of everything he used & ate in his enirvonment &

incorporated these as language tools. He was introduced to & had 1:1 training

in PECS. In those days we did not have tv but when we finally did, Barney & the

Teletubbies helped with language as well.

In the very early days my hope was for him to say or sign " I Love You & Daddy "

to his daddy, so I confess to spending alot of time (as did the ST) on teaching

that.

Instead, his first word was Mama. And the 1st spontaneous " I love you " sign was

to me....

By the time he entered elementry school, he had been exposed to & had training

on identifying pictures, PECS, sign language & basic communication devices. He

had learned & could use less than a hundred words & a few word combos.

As each year passed, I kept a list of the spoken words he acquired

until I finally stopped around 6th grade because it was in the hundreds & just

became a pain to keep up.

By the start of 6th grade he was writing words everywhere & so I shifted

attention to providing supports for his writing as a means to communicate.

He was still using PECS in 6th grade & somewhat in 7th but the notebooks had

grow so that I wanted a focus on something less cumbersome for him. So, we

shifted focus again: to assistive tech devices with voice output & predictive

spelling. We are still newbies at this as he outgrew the original devices & we

just received a new one this year.

We rarely use sign language unless needed in public (ie stop/no,lol) or he will

sometimes in desperation so we " get " what he is saying. Pecs were packed away 4

years ago.

My main concern now is that DJ became self aware enough around 5th-6th grade to

know that others could not understand his spoken word. My current goal is to

lighten that for him by enabling his voice to be understood by all. So we will

be concentrating on using voice output devices to compliment his verbal &

written skills.

So that is our saga & what worked thus far. DJ went from near zero SOUNDS to

Martian+English+alternative communication over time. I say Martian because my

theory is that he verbalizes words as they sound to him and/or as his oro-motor

can produce. So some words sound like they are from outer space.

Just remember-ALL kiddos are different. In how they respond, how they learn &

how they progress. Don't compare. Look for signs of a willingness or an

opportunity that presents & turn it into a teaching moment. Be flexible.

Whatever you use or pursue, keep in mind whether it is realistic for your home

environment. Try for as natural as possible. Keep on truckin-even if there seems

to be no progress. Trust me, our kiddos absorp many many things that can pop

out as a skill (or cuss word)many years later.

Don't dispair or give up hope. Never in my wildest dreams 14 years ago would I

have imagined that DJ would clearly be able to say " Oh Sh*t " or " What the hell

is going on " with crystal clear clarity (thanks to the movie " Back to the

Future " & rewind syndrome!)

Now, if only he would learn to say " I hear & obey oh dearest parent rulers "

with the same clarity.....

Warm regards,

Kris

>

> 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)

>

>

>