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We are a group of friends who have come together because we share the common bond of caring for someone who has Trisomy 21. We are here to share therapy tips, medical issues, laughs, accomplishments and yes, even frustrations. We embrace what Trisomy 21 has brought into our lives. We feel that it has taught us to appreciate the true meaning of life. We count our children as blessings! We will fiercely protect them and fight for their lives to be valued just as all other peoples' are. We share our pictures, our stories and our hearts here not only to provide friendship and support for each other, but also in the hopes that others will open their minds and their hearts to our unique children and, in turn, make a better world for everyone.
 

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Hi Christi!

March 30 2005 at 7:23 AM

  (Login EmilyElizabeth)


Response to She is doing fantastic!!!!

 
Well, her EI team and I are not in complete agreement about where her skill sets are right now, but this is what I see her doing and feel we need to concentrate on. I think she is making great progress though...

I think every child's needs are different. I don't believe more is better, but I do think that EJ is in a place right now where she craves alot of attention and social exposure. While I don't necessarily think that increased therapy will speed up her natural timeline, I do think that she needs to form as many relationships as possible right now and that the increased time with her EI team will only help them know her better and encourage EJ to feel safe and comfortable with them.

I think she desperately needs the consistency right now as well. Currently if one of her therapists is unable to come to a session or if their are school holidays, she can go up to a month or more without seeing that therapist and that inconsistency isn't good for her. It doesn't work well for who EJ is. With increased services, if someone is unable to attend, she will not experience the same delay waiting her next session; it will not be such a disruption to her our routine.

I do have to try to be careful to avoid the EI traps though...sometimes it is all to easy to try to rely on her EI team too much instead of taking their sessions and incorporating what we learn into our daily lives. EI is as much for us as it is for EJ...

I also have to struggle to get myself out of dark places that are defined by a list of milestones and skills all conviently located in a timeline not necessarily based on who EJ is but on who I want her to be...this is not so easy for me. I naturally am a control freak and all about micro management, and I know this will probably always be my own struggle. I am sure this is one of the biggest reasons that EJ was meant to be mine...this is what I need to learn from her.

While I am still subject to the pitfalls of insecurity and doubt, I couldn't agree more that the only goal that is of importance is progress. The rate of development doesn't matter as long as there is development. Of course, I say this fully knowing how easily I allow myself to become victimized by timelines (LOL!) - but that is my problem, not Emma Jayne's.

Anyhoo...all rambling aside, please let us know how Veronica's IFSP goes...I know how stressful it can be. Though, you do sound incredibly well adjusted to me and like you have been able to find that all important EI balance. I can't tell you how impressed I am by that! Veronica is soooo ahead of the game!

Speaking of your sweet peach, what do I have to do to see a picture of her?

I wanna see...I wanna see!

Emily
Mother to Miss Emma Jayne
Lilypie Baby Days
http://www.babiesonline.com/babies/e/emmajayne/

 
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