Re: signing

[Guest guest]

Jeanne,

I agree with you on the working thing. If it's at all possible - even to take an extended leave or something, it would make life easier. We NEVER imagined making it without my income (I was probably 65% of our income which wasn't much back then even) and we've survived - it hasn't been easy and the financial stresses have gotten to us for sure over the past 2 years. But, when I look down at that little curly headed-runny-nosed-control-queen sweet little bundle of mine, I think I'd live in rags to stay home with that kid...

I realize every situation is different and some people HAVE to work, but it's been worth it to me to stay home. And we really thought we would never make it without 2 incomes, we just sacrificed up the wazoo!

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

signing

You need to learn to do 2 things at once. When yourdoing feedings, rig the syringes up with rubber bandsand clothes lines and you'll have a free hand. Useyour free hand to look up signs in your book forcommon phrases like "more" "again" "milk" etc. Also,you can learn to do children's songs in sign and theywill increase your signing vocabulary. Songs like"Sing, Sing a Song" and Barney's "Please and ThankYou" were fun and easy to learn in sign.I also practiced signs during breathing treatments.As far as your limited time, think real hard aboutyour financial situation. Everybody's situation isdifferent, so I won't pretend to lecture you, but manymothers (including myself) who felt they HAD to workto make ends meet, eventually realized they HAD tostay home because they just couldn't meet theresponsibilities of their child AND work. Soreevaluate your finances. If there is any way youpossibly can quit or take an extended leave, it wouldtake a crisis situation and make it manageable. Myfamily told me I was crazy to quit and they were trulyworried because it put our finances way way belowpoverty level. But I told them that we wouldn't gohungry nor be homeless and nothing else mattered. Andhere it is 3 years later and we are neither homelessnor starving. I haven't bought myself new clothes inages but it really doesn't matter. I shop at Goodwilland consignment shops when I really need somethinglike a coat and it's well worth having the time totake my daughter to dr's appts and therapies withouthaving the stress of telling my boss or making up thetime when I didn't have it to make up.Finally, remember your child will be OK. You willhave to change what your view of OK is, but your childwon't. Nichole will strive to be her very best andwhen you get through the grief and mourning for thechild you had dreamed for, you will be so very proudof her and find her much more impressive than otherkids. Nichole will make you a better person evenagainst your will. You will learn what the best andworst of society holds like you've never learnedbefore. But over and above all, if you drop the"normal" expectations you have of Nichole, she will inturn surprise and amaze you. It's just another partof CHARGE.Jeanne mom to beautiful and amazing Caitlyn almost age5 cHaRgE (who's worst part of her life is these D-----IEPs and S---Y spec ed school districts!) Check outher charming self on the Kids Pix web site!__________________________________________________

[Guest guest]

& Lucy-

Lucy, your reply was very helpful, as was your article, .

This whole topic is so confusing! I guess I am really hoping Aubrie

will speak soon so that this isn't a lifelong decision. If it is,

then I will have to rethink what to do. I find it more complicated

because Aubrie can hear and tries to speak. ASL is not very compatible

with learning to speak English so I can see how it would be difficult

to relate to reading & writing English. The argument for cued

speech seems very logical to me, but I hesitate to learn it since we don't

know anyone else who uses it. What good is a language if you have

no social group to communicate with? But then what happens when you

move to a different region of the country where SEE or cued speech or some

other system is popular and you have spent a lifetime with ASL? There

are so many factors involved in our kids' development of communication

(hearing, vision, oral motor skills, fine motor skills, cognition...) that

I find it almost impossible to come up with a really "good" choice.

I hope that we continue this discussion indefinitely as we come up with

new things to consider and as our kids' needs change.

Michele W

mom to Aubrie (CHaRgE) 2.5 years and (8 yrs), wife to DJ, in

IL

west@...

[Guest guest]

----- Original Message -----

From: Michele Westmaas

The argument for cued speech seems very logical to me, but I hesitate to learn it since we don't know anyone else who uses it. What good is a language if you have no social group to communicate with?

Hi Michele,

I haven't been a participant on the Charge list for a long time, but have been getting and skimming the digests for a few years now. So I will give a little background about who I am before I answer with regards to using cued speech.

When my son, was born he was diagnosed with CHARGE syndrome (well at about 7 months old). He was born with a relatively minor heart defect, choanal stenosis, at the time he had severely retarded growth and development, scrotal hypoplasia and ear anomolies including a hearing loss. He had a chromosomal analysis done at birth and it came back "normal". But when he was 16 months old they tested for Di- and found that he had Trisomy 18 mosaic (he may still have Di- we never did find out).

As an infant 's hearing loss was severe but it has improved with time. He now at 6 is fairly reliably testing as mild in one ear and severe in the other. But with his hearing loss is also a severe articulation disorder.

Initially I tried just teaching to talk, he could make sounds but he never attempted "speech". So I started signing to him. Taking everyones advice we started teaching him Auslan (Australian sign language). It helped tremendously in the communication department - because he learnt to relate signs with speech and to actually communicate!!!

Last year however it was obvious that he was going to become verbal so we switched to Signed English. There were lots of reasons for this but not in the least because it WAS easier for all of us to sign and speak at the same time. He hears well but often drops words such as prepositions. If they weren't signed he just ignored them both in listening for them and in signing or reading them.

At the time it was really amusing to watch him. He was at a school for the deaf and was perhaps the only verbal child there. He would sign in Auslan to the deaf adults, signed english to the children and speak to the hearing teachers. Talk about Bi-lingual!!!

Late last year we decided that he could go to school in a mainstream class so we started to introduce cued articulation. Cued articulation is slightly different to cued speech but similar enough. still needed "cues" as to what people were saying, especially as we realised that he was loosing some of his vision. And not only to "hear" what people were saying but to help him actually say the words.

Cueing has actually been easier for everyone in the mainstream class, because it helps all the children in the class and its been easier for the teacher to learn. There are only 30 odd cues as opposed to the myriad of signs.

Unfortunately in Australia there are few places that use cued speech and in fact I would not have even been aware of cued speech except for meeting a CHARGEr at a US CHARGE conference in 96 who cued. Her mother actually gave a presentation on it. I travelled with them to the picnic and I must admit that I was impressed at the ease of communication with cuing and how unobtrusive it was.

It wasn't however the be all and all of techniques though so is still learning signed english at home for reading. When started reading he would read as he heard language. Signed english is giving us a medium to help him listen more fully by putting a sign with the word he hears.

The big difference with what we are doing with as compared to most children with a hearing loss is that for us signing is not the sole means of communication we are using it as a communication tool, part of a total communication deal.

There is no easy answer from what I have seen and I talked long and hard with teens and adults who were hearing impaired while I was making decisions. The answer that I got from them was a) that they preferred to know signing rather than a pure oral approach. Signed english was valuable until they had reading skills established, so until high school here (about age 12) c) Once they became "socialising teens" they preferred Auslan but felt that it was easy enough to make the transition from signed english to Auslan and most just "picked it up" along the way anyway.

All that said and done a lot also depends on what is offered where you are. The mainstream placement for is not working out as well as it should or could and so I must decide if I send him to a school for the deaf next year. Because they are closing all the signing schools here my nearest will be 2 hours travel each way and they use Auslan - so in that regard we will have no choice......... Auslan it will be.

One last comment - no matter how much research you do, or what decision you make there is a nasty little virus around called the hindsight virus - no matter what you do at some stage it will attack and bite you :-))

Take Care and Keep Looking for Rainbows!!!, mum to (5, T-18 mosaic)ICQ: 4723851AOL: Rainbowkazhttp://homepages.tig.com.au/~karenshttp://www.trisomyonline.orghttp://www.challengenet.com/~soft/index.htm