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Big News from Cecily's Closet...

2/27/2012

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Last Friday Cecily's Closet was invited to speak at UPS in front of the Women's Business Resource Group.  We are always honored anytime UPS asks us to do anything - or when they generously give of their time and talent to help our tiny foundation.  It is always surreal to us to be engaged with such a large, wonderful organization when we are such a tiny, but passionate, non-profit! After my short presentation they surprised me once again! They presented Cecily's Closet with a check for $10,000 dollars to help fuel our programs for 2012!  To say I was stunned, shocked and overwhelmed... is an understatement.  (And then of course I cried!) Cringe! What is happening to me in my old age?... I will blame the pregnancy hormones but I know it runs deeper than that.  

When Brien and I decided to found Cecily's Closet we had a vision, a passion and a mission... but we never expected in our wildest dreams for us to have the success we are having in our own community while the organization is so young.  This check will enable us to continue our Sweet Dream Room Makeover program, our durable medical recycling, and of course, our belly bands that have wrapped so many children with love here in our own backyard!

We never could have done this without the support of our community - and organizations like UPS.  (And as a reminder UPS reached out to us in the first place).  The wonderful women in the photo are 2 of our biggest supporters.  Julie (on my right) was the one who first reached out to Cecily's Closet to see how UPS and their Women's group could get involved as volunteers.   Monica (on my left) was the one who selected Cecily's Closet to receive the 10K!  Ten UPS employees were randomly selected to receive a cash contribution to the non-profit agency where they volunteered. Both women have been very involved with our organization from helping us do a room makeover for a lovely little girl in the fall - to helping us host our first big fundraiser last year at Pelly's Mini-golf! 

We are so grateful to UPS and the wonderful women who comprise the Women's Business Resource Group.  It is amazing to be part of such a lovely group of talented, smart, sophisticated, generous and giving women!  We are honored.  We are excited! And we promise to make you proud by continuing to provide services for children with special needs right here in San Diego.

I feel words are not enough to express our gratitude.  It is just such a blessing to receive this honor and these needed funds to ensure our programs can continue to run!  THANK YOU! 

Onwards & Upwards!

 

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Repost - Indiv with Disabilities Education Act

2/20/2012

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PART C of the Individuals with Disabilities Education Act:
"Infants and Toddlers with Disabilities"


The Department of Developmental Services (DDS), as lead agency for Part C, is providing the public the opportunity to review and comment on California's draft application package (application) for 2012 federal early intervention funds. The application is for Early Start, California's statewide system of early intervention services for infants and toddlers (birth to three years of age) with disabilities and their families. The application addresses the State budget period beginning July 1, 2012 through June 30, 2013.The application will be posted for 60 days beginning February 15, 2012 according to federal requirements. Please note that information may be updated prior to submission to the Office of Special Education Programs (OSEP) based on OSEP guidance and receipt of more recent information.2012 Annual State Application (PDF)Public Comment:DDS will accept public input on the application beginning February 15, 2012 until March 16, 2012. Persons submitting comments on specific items in the application should identify the item, referenced by the page number, and indicate support, opposition, suggested changes, additions or deletions pertaining to the specific item. Input will be considered if submitted to and received by the DDS contact person listed below prior to 5:00 p.m., March 16, 2012. 

Comments on the application will be summarized by DDS and forwarded to OSEP.Public Hearings:Public Hearings will be conducted on March 1, 2012 and March 7, 2012 from 10:00 AM to 1:00 PM at the DDS headquarters, 1600 9th Street, Sacramento, CA 95814 in Room 360. The Public Hearings will also be accessible via teleconference at 866 820-6817, Passcode 8064905.

CONTACT:Department of Developmental Services
Early Start Section
1600 9th Street, MS 3-8
Sacramento, CA 95814Jeannie Smalley
Voice: (916) 654-2767
E-mail: jeannie.smalley@dds.ca.gov  

Sharing in hopes of spreading information.  Onwards and upwards!
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IEP... and more

2/11/2012

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We are officially busier than ever and with a new baby on the way I'm admittedly panicked about the future.  I know we can do it... I know we have an amazing family that is there to support us... but there are days when Cecily has rough patches when I worry more than one could ever imagine! 

Over the last 6 week period I counted that Cecily had more than 50+ appointments...a normal week is about 5-6 ... but when you add on all the assessments she needed for school (yes - Cecily is already getting ready for school!) and her medical appointments which were intensive this month - it has been truly insanely busy.  We have been making almost daily trips down to Radys...  We're grateful that we have amazing insurance and an equally great medical team but there are times when I am balancing more than one should and I'm praying/hoping something does not fall off the plate.  (alas it does... but hopefully the less important stuff!)

We are nervous about her IEP on Friday... but we are equally optimistic about the next phase for Cecily because she LOVES kids and while I'm not ready for her to go to school (not even for a few hours a day)... I have a feeling she is more than ready.  She loves playing with Noah - and she loves playing with Noah's friends at his pre-school... so I am sure playing with kids at her own school would be a dream come true.  We'll be giving an update on her IEP next week.  My goal is not to cry during the session... I only cried at one assessment (cringe!).  It is just so hard to explain what your child is not doing... and the process is very deficit-based.  For our family we ONLY focus on what Cecily is doing because 1) we are proud of her and how hard she works to do what we take for granted and 2) it is a better way to live in general.  This process (while the team has been so lovely and amazing and supportive) has been emotionally draining for me.  I want the assessors and everyone to know what a gift Cecily is and that she is so much more than a checklist of tasks.... and that her cognition transcends whether she can stack blocks, or hold objects with the correct grasp.  (lalalala... rambling away here!)

The good news is after a rather rough month Cecily seems to be in a much better place.  She is getting so physically strong and she is showing weekly progressions.  This week she began giving everyone the high-5!  This is a gift because 1) we love interaction and her response and 2) it is helping her over-come her aversion to people putting their hands on her hands.  Noah loves it and we've been able to starting playing the "buzz" game with her... something we've done with all of the babies in our extended family and it is even more fun to see how much Cecily likes it, too.

Noah is getting very excited for baby Cason's arrival.  He thinks my body looks funny and he likes to feel Cason kick when he pushes on my belly.  He can't wait to have a baby brother and I just hope his enthusiasm survives those first few weeks at home when you're sleep deprived, exhausted and perhaps playing soccer into the dark hours is not first on your list of fun things to do!  

We've got some exciting things for Cecily's Closet brewing.  We've got a room makeover next weekend for a lovely little girl and one in early March for triplets! Can you imagine having triplets? I can't imagine having typical triplets let alone three children that require extra special care.  We can't wait to share the stories of these inspirational families.  We are also very thrilled with some new folks that have reached out to help us manage Cecily's Closet.  We're realizing we are going to have to delegate a lot more in the coming months to keep up with all the requests.  Thank you to the amazing people who have offered to help us try out new ways to scale our operation.  We're looking forward to letting go of the reigns a little and seeing how it goes!  

To those that have asked... no we have no intention of stopping with a new baby. Will there be an adjustment period? Most definitely. But where there is a will there is a way.  We are committed to helping make our little community in San Diego a better place for children with special needs.

Onwards and upwards!


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More than words...

2/2/2012

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I'm a talker. I like to write. I have relied on these forms of communication for most of my life.  Even as a young child I used to spend hours writing stories either by hand or using  animated programs on my Commodore 64.... My husband thinks I'm a chatter-box. I am sure there are days when he wishes he could unplug me...

Our family is now embarking on a journey together as we explore the world of alternate communication.  We are learning that while words are powerful - there are so many wonderful ways to communicate.  Our little angels, Cecily and Noah, are both very skilled at communicating their needs with and without language.  In the last month Cecily has embarked on another cognitive awakening.  She is truly communicating with us! She is expressing her needs and she is so proud of herself that we finally "get it..." I think for the first time ever we are truly able to understand what she is asking for and what she wants because we are following her lead and watching intently at what her little hands are saying...

We are uncovering the power of sign language, gesturing, facial expression and more. It is more than words.  It is a dream come true for me. I have a very special and unique bond with Cecily. I can't explain it when teachers, therapists or Doctors ask me simple questions like - "how do you know she is happy? how do you know she is tired or having pain." I just know! Or so I thought I did.  But now, for perhaps the first time I feel confident that Cecily is communicating her needs so they are met.  It may seem simple to many but Cecily never pointed at things.  She wouldn't reach or identify an object by the touch of her finger. We would follow her eyes and listen to her breathing patterns to see if she seemed excited, scared or happy. But now... all we have to do is look at her hands! I am elated with her progress. I am so proud of her achievement. And as a Mommy I am just so thrilled to be able to connect with my angel in a totally new way.

We know this is just the beginning! But we can see the glimmer in her eye and the smile that lights up her whole face (and ours) when she signs something and we acknowledge her need/want and her achievement.  This week alone she added more and more words to her arsenal... She may not always sign it "by the book"... (And Noah is quick to correct a sign...) but she is doing it!  And we are looking forward to the next phase as we uncover the power of sign and unlock the secrets to Cecily. 

And a big thank you to my friends and family who have jumped on this bandwagon and have started to learn some signs... I am so grateful.

Tonight at dinner Brien snuck away from the table and I could see him eating a mint cookie.  When he walked back to the table Noah (radar-vision when it comes to food) asked Daddy what was in his hand.  He said broccoli... Yes, a white lie but he bought it.  Cecily looks up at Daddy and signs "want cookie!" Was it an accident? Perhaps. But was it priceless!  Yes it was.  Noah quickly pointed out that Cecily wanted a cookie...I looked at Brien and we smiled. 

Onwards and upwards!



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    Noah, Cecily & Cason's Mom

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Cecily's Closet  -  Tax ID 27-2245113