DownSyn Forum

heather123 · Posted: February 04 2010, 6:02 AM Post subject:

pictuer of my 2 boys

ciarrasmom · Posted: February 04 2010, 7:23 AM Post subject:

omg those are some beautiful babies. LOVE the little pink noses. Smile

Marlene, what can I say, I missed seeing the kids here. Life is too short. Thanks for the welcome backs.

_________________

Michelle, Mom of KJnC
Kristin age 21
Jesse age 14
Ciarra age 11 (with DS)

Tmjones · Posted: February 04 2010, 5:37 PM Post subject:

how I love seeing miss ciarra's smile! welcome back. I too have been gone awhile....

_________________

Mommy to Kyle (10) Krystin (7) Matthew (4...DS)

"Every good and perfect gift is from above."

James 1:17

Katrina · Posted: February 04 2010, 6:40 PM Post subject:

We sure missed you..

Katrina and Peyton

_________________

Peyton and Paige

HannahsmomUK · Posted: February 04 2010, 8:56 PM Post subject:

Hi Chelle, nice to see you I have to confess to probably been on FB more than here and just had a lot on my plate just recently ( as you may have seen from my posts recently )

I also see you on the communicating site so don't feel like you're a total stranger to me though lol

_________________

Please visit Hannah's webpage read all about her journey
Hannah's Video

grammy to Aleena · Posted: February 04 2010, 10:59 PM Post subject:

Welcome back, Chelle. Smile

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Shirley

Tigger · Posted: February 05 2010, 1:21 AM Post subject:

Great to see you!!! I am not on FB so I love it when people post here on downsyn and give us not FB'ers an update. Ciarra is possibly more beautiful and she has always been stunning!!

Keep popping in Very Happy

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

jooniper · Posted: February 05 2010, 9:16 AM Post subject:

HI!

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Gillian
wife to Sergei and mom to Elaina ( Cool

, Zoya (6) and Polina (2 1/2 DS)
http://lintofpocket.wordpress.com/

Adens mummy · Posted: February 05 2010, 10:17 AM Post subject:

welcome back

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Aden's montage

Abigail'sMom · Posted: February 05 2010, 2:45 PM Post subject:

Welcome back! Ciarra is getting to be such a young lady, thank you for the pics.

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Eli
Mom to Abby (DS 10/21/03), James Thomas (01/31/06), Katie (08/12/08.)

Jenell Allen · Posted: February 06 2010, 6:31 PM Post subject:

are you the Mom that posted a youtube video of Cierra talking about classmates? I remember being so encouraged and impressed. Can you let me know what worked? Tiana is three and quite the babbler. No words yet, lots of signs.
If wrong mommy, so sorry
just have to say your daughter is beautiful and I am glad she is such a blessing

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ciarrasmom · Posted: February 06 2010, 8:19 PM Post subject:

Jenell, yes, that was me. Heres that video:

http://www.onetruemedia.com/shared?p=422d09004fd975365e9074&skin_id=801

Here is a recent one, her science project at school on volcanoes:

http://www.onetruemedia.com/shared?p=9ff2c18537659db7a64742&skin_id=1702

this is her with her bff Julie, they didnt know I was videotaping, I was trying to catch conversations:

http://www.onetruemedia.com/shared?p=9c54264bf7b752c8752270&skin_id=701

here she is at 4, she had just learned to tie her shoes:

http://www.onetruemedia.com/shared?p=de1553053571e39a575fe&skin_id=801

I am sharing these so you can see the progression over time. Even at 11, Ciarra's speech and her overall communication continue to grow and change everyday. Many people will say that if a child doesnt have speech by 3 or 4, they never will. I have found that isnt true. Since Ciarra was a small baby, probably almost 2, I have been following Dr James McDonald's Communicating partners. It is a free online resource plus books you can order. But mostly, it is a theory about communication, that the PARENT is the best speech teacher, but only if they learn to play on the childs level and stay there as long as the child needs them to. CP is about all forms of communication, not just 'speech". It really encourages you to get into your childs world and imitate and build on their sounds, grunts, whatever, even their actions can be communication. if you engage them where they are, they are much more likely to join you.
http://jamesdmacdonald.org/Articles/MacDonaldStart.html is the site. There is an online listserve that is a tremendous benefit as well. if you read the advice and the interactions on the list, you can usually gain knowledge through where others are. It is a terrific place to ask questions, too. http://jamesdmacdonald.org/Articles/OnlineDiscussionGroup.html Dr Jim recently suffered a stroke, and his spelling isnt always perfect, but he ALWAYS responds. This list is 90% of why my child speaks, I believe. Because *I* learned how to speak to her, and learned not to do things that caused her to regress...like constantly asking her to repeat things I knew she knew just so I could hear her talk or show her off. It made her resent talking, and I am SO grateful that I learned to stop it way back when. But many new parents come through all the time, some with older kids, and it is NEVER too late to get started. I really really believe in this program. I also think things like harmonicas for very little infants and any air toy are GREAT therapy tools. A harmonica gives a child a cause and effect, teaches them breath control, and allows them to feel like they DID something exciting with their sounds.
anyway, any other questions please ask. I wish every new parent could know Dr Jim.

_________________

Michelle, Mom of KJnC
Kristin age 21
Jesse age 14
Ciarra age 11 (with DS)

ellenstumbo · Posted: February 07 2010, 4:00 PM Post subject:

Great to see you again Chelle!

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Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

Ditta · Posted: February 08 2010, 3:41 AM Post subject:

So glad you're back Chelle, I don't do facebook and have missed you and Ciarra!

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Anna

Mummy to Matilda (2005,) Philip (2007) and Teddy (DS, 10/2009)

ellenstumbo · Posted: February 08 2010, 10:33 AM Post subject:

Thanks for sharing those videos Chelle! Wow! She is doing fantastic! The one on youtube I have watched several times and had our speech therapist watch. She was impressed!

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Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

ciarrasmom · Posted: February 08 2010, 12:01 PM Post subject:

now is a good time to plug Communicating partners. I SWEAR by all I learned there. If your ST is open to GREAT techniques to get a kid talking, have her check out communicatingpRTNERS.ORG AND ALSO THEIR LISTSERVE. i HAVE LEARNED so MUCH THERE.
ps thanks

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Michelle, Mom of KJnC
Kristin age 21
Jesse age 14
Ciarra age 11 (with DS)

lespring · Posted: February 08 2010, 12:35 PM Post subject:

Who is telling parents that if kids don't talk by 3-4, the likely never will? I have never heard that before.

But there is plenty of research done by Libby Kumin and others that says on AVERAGE (remembering that when talking about DS, the spectrum of "average" is quite large) On AVERAGE kids with DS don't usually start talking until age 4.

Communicating Partners has a great philosophy. I never connected with them, but used the same techniques on my own. Thankfully I was well connected in the special ed. community, and as a sign language interpreter I had a FLUENT visual language model for Angela.

That's the thing about signing with kids who have DS. You have to remember that the vast majority of parents aren't fluent in sign, so you're providing a broken language model to your child. Language in/Language out. Broken language in/Broken language out.

Angela talks very well (and incessantly) MUCH better than she should be given her level of hearing loss. She *should* be largely unintelligable, and relying in ASL. But she's not, and she doesn't. I credit that to following the techniques I did, plus using Cued Speech to give her a visual, phonetic based language model. That didn't start until she was 7, and it still made a HUGE difference for her!

_________________
~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

ellenstumbo · Posted: February 08 2010, 2:35 PM Post subject:

ciarrasmom wrote:

now is a good time to plug Communicating partners. I SWEAR by all I learned there. If your ST is open to GREAT techniques to get a kid talking, have her check out communicatingpRTNERS.ORG AND ALSO THEIR LISTSERVE. i HAVE LEARNED so MUCH THERE.
ps thanks

See, I checked that out before, but was overwhelmed by all the information. Is there a place to start, or a "beginners" place.

Nichole says a lot of words...the beginning of the words that is, so ba, ba, and ba, mean ball, barbie, and bible

I feel like if I say a word VERY slow she can imitate the sounds better. And I mean VERY slow, so I am wondering if her mind does not hear the entire word as she is just processing the beginning of it? Make sense?

_________________
Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

ciarrasmom · Posted: February 08 2010, 3:17 PM Post subject:

you're right, the listserve can be overwhelming. Its getting busy. It is so familiar to me to hear Nichole is only saying the beginning of words, Ciarra did that too. Speech truly has been a long adventure, and she continues to make gains all the time. If the CP site is too much to take in, maybe you could order Play To Talk by James McDonald. It really realy is a great book and consolidates the CP method.
Leah, yeah, you would be surprised how many parents have been told that, sad huh? I was like you, I did a lot of the CP method naturally. But I got stuck in the making her repeat things I knew she knew stage. Basically, I was wanting to show her off, versus communicate with her. That was going backwards. Kids dont want to repeat the same thing, they want to play, interact, laugh. I am really proud of Ciarras speech, it has come SO far now. But I expect it will be a lifetime work of art, she will never stop learning, and I hope I wont, either.

_________________

Michelle, Mom of KJnC
Kristin age 21
Jesse age 14
Ciarra age 11 (with DS)

momofrussell · Posted: February 08 2010, 7:05 PM Post subject:

What I learned back in college in my classes and with our ped neuro with Russell, is that the "norm" for typical kids is if they don't develop language/speech by age 5, the likelyhood of them talking is slim to none. BUT...that is for a typical child, not one with DS. Our neuro still used it as a guideline though for when talking to us about Russell back when he was 4 and we saw him for the Autism and lack of language.

I think because our children are delayed cognitively/developmentally the norm of age 5 is skewed.

It's funny, years ago I would tell parents what our neuro said and they'd be offended for us. They reassured me that their child w/DS (usually boys) didn't talk until 6, 7, 8 yrs old. So, they always told me Russell would talk one day...and I waited and waited and waited LOL

My college courses and Ped Neuro was right on for Russell Wink

I think the ones w/DS that talk later like 6, 7, 8 yrs old have other forms of language/communication.....Russell didn't/doesn't. That's the key. I think Pauline's son has never talked and Russell has never talked, but I think it's rare for a child with DS or typical for that matter, to NEVER speak words..... they just can be very delayed with speech from what I have seen in the past 11 yrs.

Oh..and Hi Chelle! LOL

A.

_________________
Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 9.

DSAGSL 2009 Buddy Walk

wmartv · Posted: February 08 2010, 10:53 PM Post subject:

Welcome back! I Facebook more these days too but there's nothin' like this site to make you feel like you're not alone on this journey. I always liked reading about your daughter and the others who are slightly older....it gives us hope!

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Marge
mom to Michelle 4/7/98
and Rebecca 9/30/03 (DS)

lilpayton · Posted: February 09 2010, 4:05 PM Post subject:

Haha! I've been AWOL too ... popped in to search for an old thread of mine and saw this. Hey Chelle! Smile

I always hope to stick around, but time never allows me. Sigh. Must try harder. LOL

_________________
Bethany, Mommy to Mason (6), Payton (4, DS) and Addison (3, DS)

Family blog:
http://thebalsisfamily.blogspot.com/

Adoption blog:
http://dreamingonanangel.blogspot.com/

Take control of your health with Juice Plus
www.livelife-juiceplus.com

Jenell Allen · Posted: February 11 2010, 10:41 PM Post subject:

I looked up the info and was so encouraged. You have no idea! I wrote Dr. James McDonald about our situation. My husband and I are working with the Purepecha Indians and are torn between our calling and Tiana's needs. He assured us that what we can do for her as parents is better than any program in the states. I have already implemented some ideas and feel like things are going to be okay. Thank you thank you

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ciarrasmom · Posted: February 12 2010, 8:24 AM Post subject:

thats awesome. Dr Jim is wonderful about being very personally involved with "his kids". He is amazing. Im excited for you.

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Michelle, Mom of KJnC
Kristin age 21
Jesse age 14
Ciarra age 11 (with DS)