I think I met my daughter today

[ALLISA]

Hey all.....

I just wanted to post an update on Erin..... SORRY SO LONG !!!

Actually A made me think of this subject because of a comment she made on another thread....I don't remember what it was exactly but it was to the effect that Russell's multiple diasabilites make it hard to separate the CHILD from the DISABIBLITY.....

I have felt that way for a looooonnnnnggg time about Erin.

When people day comments like " DS doesn't define her"....I would think to myself...."I think it DOES define Erin....I don't know how else TO define her" I had yet to glimpse her pesonality beyond showing me when she is frustrated about something.....and sadly she shows me that a lot .....

I think it was the AUTISM getting more in the way than the DS.....when you realize your child has DS....you grieve over "losing the typical child you pictured"......BUT.....then you re-picture in your head your "DS child".....happy, loving, etc.etc....that's what pops up in people's minds.....but Erin didn't quite seem to fit that either.

I have never had a REAL conversation with her.....there is no back & forth communication, she hardly seems to here in the room with me....so I have never really felt like I KNOW her...

I promise this thread has a happy ending....I know it seems doubtful right now......

But we were sitting on the couch yesterday and she was singing songs with me....and trying to get me to do "this little piggy went to market"...that is her FAVORITE......

Well, I have been doing a TON of signs lately and not giving her anythign without her first signing for it.....seems silly because I know when she sticks her little foot in my hand she wants more "piggies"....but I make her say and sign " I want more piggies"....and she does !!

Well, she was also eating gummy bears at the time and I held the container and she reached in & took one out so nicely and ate it....no throwing the container, no grabbing ALL of them or any other behaviors that she had in past...just one at a time.....

and if I moved the container over to give her access for another......she GENTLY pushed it down and signed " I wnat more bears" before she would take one....I am welling up right now remembering it

It was just so sweet and so NORMAL, so quiet and so calm.....haven't had a whole lot of calm around here in the last 6 years.

Her improved communication is such a blessing....it is so nice to feel like I am communicating with her....it is still not anywhere near where I want it to be......but sitting on the couch relaxed, laughing and HAVING FUN with Erin was so precious to me.

More and more I get to see HER.....she is in there and guess what.... she is looking me SQUARE in the eye.....very rare for her and she is WITH me, not off in her own world.

Thanks for letting me share,
Allisa

ps....one of these days I'm gonna get my act together and add a photo album ofErin and everyone and be warned.....it will be the biggest album there...you'll all be SICK of Erin ;D

[CC]

;D ;D ;D ;D ;D

Your post made me smile

CC ~

[cindylou]

Allissa-
I am so happy for you--
I haven't experienced that with Kaylee, but I know it would break my heart like it obviously does yours.
I admire your committment to making Erin sign-because that will just encourage her to engage with everyone around here-

Thank God for moments where we connect with our kids--just gives us that little bit of fuel to get over the next hill, right? Sometimes I have these great times with Kaylee, when we're one on one--and I can't get enough of them. Life is usually to fast paced to have enough down time with them, isn't it-
Happy for you AND more happy for Erin, to have a mom that's committed to her having a full life-gummy bears and little piggies and all-
cindy

[TriciaF]

Allisa,
Thanks for sharing this precious moment with us....these are the real "times of our lives". Can't wait to see the album!

By the way, I know we don't talk much autism here, but the mom's night out group I belong to is multi special needs and lots of mom's with kiddos with autism. There is a new computer product about to come out that was co-developed by Mark Shelley, a guy I went to high school with, who still lives in my area. The idea is to take the "social stories" taught in books and convert them. I will go see if I can find the info.

Ok, there is info on the social stories author site. The product is listed as this week's featured resource.....Storymovie.

www.thegraycenter.org/

[Emilysmom]

Awww Allisa.........this post gave me goose bumps! I appreciate so much that you shared that moment with us! I promise, we won't get tired of Erin pictures or Erin stories.......post away!

Susan

[momofrussell]

Like looking through a mirror I tell ya Yes, I too can't really seperate the DS from Russell.. to me it just is what it is and that's that!

Your post was WONDERFUL Allisa!!!! I floated in and out of your world with Erin, in that post, knowing I was reading about MY world too. I am glad you and Erin shared that special moment. What a precious moment it was. I am VERY VERY happy for you... and for Erin!!!!

Now... a question.... on the signing. We do make Russell do "sentences" when he does signing. We still have to prompt him but we work on it. Do you have to prompt Erin or is she initiating sign? If I ask Russell what he wants... EVERYTHING use to be "music"... now he can say music or eat... which is the two things he comes to me for. My sentencing is "Music Please MAMA" I like your sentencing better! LOL... do you do the signs for *I* and *WANT* with Erin? What are those signs???

I would love to chat with you more on this!!!!

A.

[Jessie]

That was an awesome post Allisa! Thanks so much for sharing that.

Also, great job on making her sign for what she wants, it will absolutely pay off in the long run. Trust me (as someone living with a teenager that can't communicate well), this will be a priceless gift you give to her - giving her a way to communicate until the verbal skills kick in.

A. - we make Jason do the "I want . . . , please" thing. We started off prompting him with the "I" and "want" signs and then went from there. He just needs for us to raise our hand to start to sign "I" and he takes it from there (verbally). The visual prompting we are having to do is fading as he now understands what we are expecting him to do. He has been able to say "please" for a long time, so the words he gets stuck on are the nouns or verbs of what he actually wants. We make him repeat those words (once we figure out what it is that he wants) and then he has to say the whole request again, "I want a cookie, please".



Jessie

[ALLISA]

Jessie....that is what I do with Erin....I "help" her out by saying & signing " I want" and then she prepeats " I want" and fills in the blank with waht she wants".....

In her IEP I wrote that she is to learn AT LEAST 10 new signs a week.....at this point mostly food preferences,....because that stubborness is a bear when you don't present her with the EXACT item she is thinking of !!

A....."want" is arms held at somach level, palms up, close to body and "slide" away from body and back in.....Erin will sometimes jsut stand in front of the fridege and sign "Want" !! LOL and "I" is just the thumb pointed in at self.

They started the "Iwant" at school and it worked like a charm ;D

She uses words with her signs....and I would say she intitiates at LEAST 3/4 of the time...... ;D

But I'm telling you ...it is the EYE CONTACT that has me smiling....because now it's like really seeing her and she is seeing you......so hard to explain if you haven't been through it.....but Ty said to me the other day that Erin looked so much cuter to him and he didn;t know why because she LOOKS THE SAME.....and I KNOW it is because of the eye contact....she looks complete when she is looking right at you instead of off in her own space.

No idea what made the difference.....but so glad to have it !!

Allisa....ps A.....I'll PM you later when I have more time !!

[momofrussell]

I get it Allisa....the eye contact... I understand completely. When you don't have a child that makes eye contact and doesn't "engage" with you, you do miss alot. I know I do. Eye contact in it's natural form is bonding... plain and simple... and I am so jazzed you got to experience that with Erin!!!!

Maybe that's next for Russell now that he is dusting my house! LMAO

And yes... thanks for the "want" sign... some of the signs I have seen before or know after someone says or does them... I forget them. I will do that today with Russell!!! We do "help" with him because that's what he comes to us for alot LOL... help! heehee... now we can do the WANT too!

A.

[Chester]

What a huge day! Hooray! Your post gave me goose bumps!!

Dawn

[ValerieC]

So happy to hear your fabulous news about Erin! It's those small, but HUGE, special moments that keep us going. Though I don't understand what you're experiencing with Erin, I can surely feel your extreme emotion.

WTG Erin!

[Pat]

;D ;D ;D AWESOME ;D ;D ;D

Pat

[edugatortracy]

Allisa- What a wonderful and encouraging post!!! GOOD JOB, ERIN!!

T

[2forme]

Reading your post made me teary eyed. I hope you have many more encounters with your daughter. Keep up the good work...