Tough "words" to see

[tyandsophiesmom]

Thought I would shre how I spent my Saturday night. I thought since it has been crazy around her lately with my mom and Soph that we could use a night of just us. So last night we stayed up late, laughing and tickling and just laying around together. Out of the blue Sophie started to sign something we had never seen before so we did our usual process to find out what she was trying to communicate. Her signs are not exact so sometimes this takes awhile. Finally just before she got completely exhausted I looked at my DH and he looked at me a nodded. We know what see was trying to say. So I got up the nerve and said "are you signing you want to talk?" Yes, she signed. We both teared up and started to explain how great signing was and how new "talking machine" (that's what we call the aug board she just got) was going to help her at school and with her friends. But I can tell you my heart was breaking for her.
After our chat I scooped her up and carried her to her room for bed, we read our book and put on our ST CD and I looked over at her and wondered how long has she felt this way. We always assumed, well I guess hoped that since she never talked she wouldn't miss it. I know that sounds nieve but I though she has so much to deal it would be easier for her if she didn't realize.
I always knew she was so much more then what shows on some standardized test!

[jensmom]

Aren't kids wonderful and complicated beings? Thanks for sharing this story about your precious daughter!

[aligreat]

When Cassia wanted to be able to go up and down stairs (like her twin, Alexandria) we worked with her PT for months to teach her the skills she needed. Sometimes she wants to drink from Alexandria's cup, but if Alexandria is having a thin liquid (which Cassia would aspirate) we have to say no.

I love Rachel's mantra, "Lucy will do what Lucy will do when Lucy is ready to do it," but how do you explain that to a small child who wants to do it now? Where possible we try to come up with ways to teach skills, but what do you do when those skills just aren't there? It is tough to see your little one going through this.

[lovemy6sweeties]

And I have to agree with you - our kids are sooo much more than shows up on standardized tests... I always tell people that Brady looks really bad on paper, that you have to meet him in person to really get who he is :)

I hope that Sophie's talk machine and signing will help her, and my heart breaks that she wants to talk but can't just yet... I think that as parents of kids with special needs we will all experience this in one way or another with our kids, and it is hard. I don't have any words of wisdom, just wanted to send you some cyber hugs and prayers that Sophia will be able to do all that she wants to do - the same prayer that I have for Brady and all our kids!!!

Hugs!

[fia's mom]

Big hugs for Sophia!!! Children are just amazing. I really do hope that the aug board helps her with talking and I think it's wonderful that she can express that she wants to talk. Sounds like you have an incredible little girl who has a lot of drive to her. More hugs going your way. Also, I remember your post about your mom and she is still in my prayers as well.

[lovemy6sweeties]

Congratulations!!!

[c01dunlap]

Big hugs for Sophia!!! Children are just amazing. I really do hope that the aug board helps her with talking and I think it's wonderful that she can express that she wants to talk. Sounds like you have an incredible little girl who has a lot of drive to her. More hugs going your way. Also, I remember your post about your mom and she is still in my prayers as well.
Well said. I echo what Bridget says here. Lots of hugs! And, oh, what a heartbreaking way to end a day of just you. But maybe that's what helped Soph to bring herself to express that. Bless her little heart. Thoughts and prayers for all of you, mom included. ST! hugs!!!!

[tyandsophiesmom]

Thanks for the hugs and all the prayers!

[jenml]

It's good that you are there to validate her feelings, even though it is out of everyone's control... it will help her self-esteem and happiness to know that YOU and your husband have heard her wishes and that you're all working towards it. Validating her frustration is important.

Thinking of her... I choked up reading your post... can't imagine her frustration. :(

[ASLReBecca]

signed. We both teared up and started to explain how great signing was and how new "talking machine" (that's what we call the aug board she just got) was going to help her at school and with her friends. But I can tell you my heart was breaking for her.

I know I've been out of the loop a LONG time, but which aug board did she get? We've had the Dynavox for a long time. Just curious....

[tyandsophiesmom]

Right now she is using a "springboard" but she has also been working with the "chatpc" (which is really cool!). We are to have another sett meeting in September to pick one for her. What do you think dynavox?

[ASLReBecca]

My son wasn't thrilled with it. It seemed to take us too long to program it, it never said what he wanted to say, so we were busy programming a LOT! It was hard work trying to figure out where the files were to go, and it wouldn't work outside in the sunlight, even tho Dynavox told us it should be fine. We had problems with it and had to send it back three times, and each time it came back there was always something else wrong with it. So you probably might want to find someone that has had a good experience with their dynavox.

Craig also says the voices were "Yuck!" :eek: Since I couldn't hear the thing even if I wanted to, I can't explain what yuck means to him.

Smiles,
ReBecca