The power of support . . .

[Jessie]

I know that when a new person joins UnoMas, we always welcome them and tell them this is a great place for support. I really hope that the newbies here do stick around, I can't express enough to you how much everyone's support on this site has meant to me.

I've been thinking about this so much over the last couple of days. Thursday, Laura (Laurasnowbird) and I got to meet and have lunch. Yup, two pregnant mommas and Jason having lunch together - LOL.

Anyway, after our two-hour lunch I felt so much better about things that I need to do for Jason. Laura - the letter to request a new IEP meeting after school starts is typed up and will be in the mail to the school on Monday! It's amazing how much it helps to talk to someone that understands what part of your own world is like and can offer some truly significant advice. I don't know why I needed someone else to feel as disgusted with Jason's school situation as I do in order to take action, but for whatever reason, that's what it took to get me to type up that letter.

I guess in a nutshell, I just want to thank all of you that have been there for me and helped me along the way. It's been tough jumping into this situation with Jason already at the age he is and trying to get up to speed on OT, ST, PT, IEP's, and everything else that goes along with Jason, Special Education, State resources, insurance, etc.

I don't want any replies to this post where you guys are once again telling me that it's great what I am doing - this path was chosen for me when I met Brian - I didn't go seeking it and God didn't give me this child by birth. This post is to THANK all of YOU for being there for me and to let the newbies know that it's a great place to stick around and learn a ton of stuff and meet some wonderful people.

Maybe everyone could post up about how something, somehow, someone, some piece of information from UnoMas helped you out when you needed it?

Oh, and me and Laura both have an ideal Christmas gift for both Ethan and Jason this year - an Etch-A-Sketch! The waitress at the restaurant gave one to my poor, bored-to-tears child during lunch while Laura and I continued to gab! As Laura pointed out, it's a good toy for working those fine motor skills.


Jessie

[Valerie]

Well, Jessie, there's a LOT...but 2 things come to mind quickly. I learned of the Signing Times videos on here, and they have been WONDERFUL!! I also learned of where I could find shoes to fit his odd shaped little feet, and that's been good, too! He never wore shoes until I found this site in February, because I couldn't find any to fit him! He had slippers he wore last winter! Now he has cute little boy shoes!

Also, I didn't know about the sensory integration problem, the headphone technique, cued speech, the list could go on and on. I've learned a lot here! So I owe a big thanks, too! ;D ;D ;D ;D

[Chris]

Valerie,

My daughter is watching a Signing Time dvd right now. She can sign every word while watching the dvd. She is also attempting to say the words while she signs. I have all six of the dvds and have just ordered the two baby signs dvds that are coming out September 6.

Jessie ~ thanks for the post.

Chris

[dannysmom]

I don't know where to begin.........When my little boy was born 2 months ago I had no idea he was going to have ds and av canal defect. I had all prenatal tests and they showed nothing. When they told me in the recovery room (I had a c section) about my little boy....I thought the end of the world must be coming. I didn't think I would ever have the strength to face ds and open heart surgery.

Now that I have had time to breath, educate myself (mainly through unomas) my world has once again begun to return to normal. Surgery was a success, my boy is doing fantastic, I couldn't feel more blessed right now.

All of the support I received prior to surgery allowed me to make it through that ordeal. I even had the opportunity to help someone else who is going through surgery now. Can you believe that? I was able to contribute and help someone and it felt wonderful to do so.

I have learned through this site that life goes on and it is even going to be happy!! All of your children are growing, learning, achieving and living their lives to the fullest.

I am only beginning my journey with my son, but I have learned to have hope, dreams and excitment for the future with him as well as my daughter. You all have shown me that, and I am grateful to you all.

[pattymm]

Hi,
I'm Patty, Kaila's mom. She is 6 with ds. Anyways, I love the Bumble Bee tapes; opposites, abc's and numbers. I also like the Richard Scarry DVD's for Kaila. She knows how to review it, and she sings the abc's perfectly now just by reviewing it over and over again.
My friend is a behavioral analyst, and she said to get toys and things that are repetitious, because our children have fantastic memories! She said that we can really build on that, and there is nothing like the toys, dvd's and software now a days:)

[CC]

WOW JESSIE girl that is sooo Cool that you and Laura got to meet up ;D and how cute you two prego's must have looked Have to tell you girl noooooo way noooo how would my little character sit for 2 hours while I ate and gabbed, even with an etch a sketch Soooo WTG Mr. JASON, I am truly impressed

For me thru UNO I have learned its OK to laugh, cry, laugh, vent, laugh, scream and more laughing What really got me thru some hard times was meeting some GREAT people here and the old time group YAHOO chats. OMG they were just sooo much fun and I truly would LOL till I almost PIMP

CC ~

[momofrussell]

GREAT thread!

I have learned a WEALTH of knowledge over the years her and just on the net in gereral. but ALOT here! Russell was 2 when I came on and I was not doing the school thing until he was 3. I soaked up and learned ALOT about IEPS, FAPE, ect... through many parents and by the time I had to do it all, I was COMPLETLY comfy with the whole school process. I learned alot more on the way but I was not scared due to the knowledge I had aquired.

I am one for "knowledge is power". It is VERY empowering to know something AND have a place to SHARE it with others. When I first came here and for a few years afterwards I could NOT relate to probably 90% of what goes with other kids that have DS. It took me along time and through a friend here that my son did not just have DS.... but without Uno, I may still be living in the dark! After 5 yrs here, I still can't relate sometimes do the milestones and where alot of your kids are, but I DO feel I can contribute more then I did way back when! I do have more to post on Russell now too! I went from feeling like a fish out of water to feeling totally complete here!

Jessie, the thoughts in your post are how I think alot about Uno and life in general with Russell. I am reflective by nature and think alot how far I have come in my walk with DS and knowing being here helps me and others! It's an awesome feeling. And to know that getting new members means we get to share and "pay it forward" means alot to me. To me "pay it forward" is whats it all about and very important!

Glad you got to meet Laura! She is a cool kinda gal isn't she!

A.

[laurasnowbird]

Yikes! I've been meaning to respond to this for days, but preparation for school and meetings out of town have kept me running.

Gotta tell you guys, we must have looked a sight at Max and Erma's, two pregos munching away. Jessie is the cutest prego ever! And Jason is a SERIOUSLY handsome young man. He was so well behaved it was amazing! I was very impressed.

Whether it was a conscious choice or not, Jason is very fortunate to have you in his life, Jessie! Not everyone would jump in and learn to advocate as you have.

As far as it taking someone else's disgust to encourage you to take action, I think we have all been there at some time or other. The folks at school and therapy can be so good at making us feel like we are being unreasonable, or worrying too much, or expecting too much, etc. etc. etc. It's hard not to buy in to their line of crap sometimes, LOL! They ARE the professionals, and it takes a lot of courage for us to say "I think you're wrong!" and insist that they do things differently.

When I first found Uno, I hung out in the Health and Medical Issues forum, because that was my focus. It took me a while to get more interested in and enjoy the social aspects of this board. It was definitely an evolution for me. I miss the chats we had here on the board!!!

And A., I totally agree about "pay it forward". We have all been helped in one way or another by this board, and if we pass the torch, well, that's a very GOOD thing! By the way A., I already told Jessie that you were one awesome gal, and that Russell is a DOLL!!!!