The Sofia & Vincent Calvanese Memorial Foundation - Fundly.com (takes you to their site)
We are now set up on Fundly.com to accept donations and sponsorships. Thank you to everyone for the support in years past and this - our 5th year! - funding Abington Memorial's NICU and CHOP's NeoNatal Follow Up Program. Click on the above link and feel free to send any additional information to me directly at jennifercalvanese@yahoo.com
We hope to keep growing in the near future... we have many projects in our pipeline that we can't wait to share with you all!
Thanks!
Vince and Jen Calvanese & Family
Sunday, January 29, 2012
Sunday, January 15, 2012
Oh Bald Barbie, why are you making me lose sleep!!!
Do you remember those "preemie" cabbage patch dolls from our younger years?????
It was cool to have a preemie. The March of Dimes had partnered to make the doll and have some of the proceeds for research. Well all these years later, I'm the mother of 2 preemies and 2 angel preemies and I see one in an "antique shop" in Maryland while shopping with my mother in law. I had to duck out of site for a moment, because I immediately felt 100% sick to my stomach.
There she was, all packaged up like the fad toy that she was in her prime. Never touched, perfectly the same. That's how I feel about my own kids who are not with me anymore and my stomach turned sour. My mind had changed on the little doll that once I thought was cute.
Did we think about those dolls differently - did it make an impact??? Was this an opportunity to raise awareness? Were the parents using it as an awareness tool? Not that I know.
So how the hell is Barbie - the nemesis of reality - supposed to help young girls? She's a woman! She's not even a child that they can relate to! You want to teach your kids about cancer?? Read them Alex and the Amazing Lemonade Stand. Proceeds GO to research. If this thing comes to fruition, I hope that Bald Barbie won't cause some mother to cry in an antique shop some 30 years later. I hope she is a reminder of how we changed young girls' minds about awareness. I hope. Mattel has yet to comment and I hope it's because they are taking the same amount of time to think about the impact.
I sent the picture of Patch to my fellow preemie friend and have since deleted it. So here you go - this is a preemie. I'm not one to be overly sensitive or outspoken on much... but Bald Barbie, you're causing me to lose sleep. Ergggggggg
It's not a silly thing. It's not just a doll. It took an experience to realize that.
It was cool to have a preemie. The March of Dimes had partnered to make the doll and have some of the proceeds for research. Well all these years later, I'm the mother of 2 preemies and 2 angel preemies and I see one in an "antique shop" in Maryland while shopping with my mother in law. I had to duck out of site for a moment, because I immediately felt 100% sick to my stomach.
There she was, all packaged up like the fad toy that she was in her prime. Never touched, perfectly the same. That's how I feel about my own kids who are not with me anymore and my stomach turned sour. My mind had changed on the little doll that once I thought was cute.
Did we think about those dolls differently - did it make an impact??? Was this an opportunity to raise awareness? Were the parents using it as an awareness tool? Not that I know.
So how the hell is Barbie - the nemesis of reality - supposed to help young girls? She's a woman! She's not even a child that they can relate to! You want to teach your kids about cancer?? Read them Alex and the Amazing Lemonade Stand. Proceeds GO to research. If this thing comes to fruition, I hope that Bald Barbie won't cause some mother to cry in an antique shop some 30 years later. I hope she is a reminder of how we changed young girls' minds about awareness. I hope. Mattel has yet to comment and I hope it's because they are taking the same amount of time to think about the impact.
I sent the picture of Patch to my fellow preemie friend and have since deleted it. So here you go - this is a preemie. I'm not one to be overly sensitive or outspoken on much... but Bald Barbie, you're causing me to lose sleep. Ergggggggg
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| Actual Preemie |
It's not a silly thing. It's not just a doll. It took an experience to realize that.
Thursday, December 29, 2011
Transitioning from the IU
We just received the call to transition my four year old from the IU to her Kindergarten. I cried thinking about how difficult even getting this phone call was for us last year on our first go at it.
I learned a hard lesson waiting on the IU to transition my five year old... because it never happened. The "meet the teacher" day turned into me explaining to a very surprised teacher that she would be receiving a student with processing disorder, anxiety and speech apraxia. Even with my nagging the school and the IU, it was the squeaky wheel getting no where fast. Everyone has their own check list and blame game, but it's on a parent to just make sure it's done. I heard about "lost" documents... I had a new IEP scripted... I hand delivered. You would think ????!!!!!
This time I was on my game. Meeting is set and I plan on adding a few more "drop in's" to make sure transition happens. SO WHERE TO NOW.
If your child should be getting ready for Kindergarten and is receiving Intermediate Unit services, it is important that you set a meeting with the IU for this to happen. Even if they say they'll call you and it's you calling them. Even if they have a meeting and papers are supposed to transfer. Even if you think it's all happening smoothly - MAKE SURE you are 100% right. Call your school and have them determine if the records have been received and that they are correct.
Even with the IEP... oh the IEP. ... I have my skepticism about how well it really says what your child's strengths and weakness may be. How can you know a child enough to write a report when you've met them once and are asking them 100 questions? We also took them thru a neonatal follow up clinic at CHOP (Children's Hospital of Philadelphia) and had a Doctor do her own evaluation and over a period of several weeks. The report also held into account things that we as parents wanted to talk about as well. They test with different tools as well, so you get a more well rounded answer.
Don't put all your eggs in one basket especially if your child isn't cut and dry and even more so if they don't do well under pressure and/or with a stranger. Getting another opinion is also an eye opener as a parent. They were able to give us recommendations for things to do at home. This you won't get from the IU or from school. Things that they know because they know YOU and how you are with them.
Kids with IEP's should register thru the IU for Kindergarten. Period. But have some back-up documents for the school so this is not their only judgement of your child. Be a jerk, be nice. Be whatever you have to be. Help that child.
I learned a hard lesson waiting on the IU to transition my five year old... because it never happened. The "meet the teacher" day turned into me explaining to a very surprised teacher that she would be receiving a student with processing disorder, anxiety and speech apraxia. Even with my nagging the school and the IU, it was the squeaky wheel getting no where fast. Everyone has their own check list and blame game, but it's on a parent to just make sure it's done. I heard about "lost" documents... I had a new IEP scripted... I hand delivered. You would think ????!!!!!
This time I was on my game. Meeting is set and I plan on adding a few more "drop in's" to make sure transition happens. SO WHERE TO NOW.
If your child should be getting ready for Kindergarten and is receiving Intermediate Unit services, it is important that you set a meeting with the IU for this to happen. Even if they say they'll call you and it's you calling them. Even if they have a meeting and papers are supposed to transfer. Even if you think it's all happening smoothly - MAKE SURE you are 100% right. Call your school and have them determine if the records have been received and that they are correct.
Even with the IEP... oh the IEP. ... I have my skepticism about how well it really says what your child's strengths and weakness may be. How can you know a child enough to write a report when you've met them once and are asking them 100 questions? We also took them thru a neonatal follow up clinic at CHOP (Children's Hospital of Philadelphia) and had a Doctor do her own evaluation and over a period of several weeks. The report also held into account things that we as parents wanted to talk about as well. They test with different tools as well, so you get a more well rounded answer.
Don't put all your eggs in one basket especially if your child isn't cut and dry and even more so if they don't do well under pressure and/or with a stranger. Getting another opinion is also an eye opener as a parent. They were able to give us recommendations for things to do at home. This you won't get from the IU or from school. Things that they know because they know YOU and how you are with them.
Kids with IEP's should register thru the IU for Kindergarten. Period. But have some back-up documents for the school so this is not their only judgement of your child. Be a jerk, be nice. Be whatever you have to be. Help that child.
Monday, December 26, 2011
Daily Bloom!
Click on the link below to see our Foundation previewed on DailyBloom.net!!!!:
Our Foundation is being featured by Daily Bloom... a group of awesome Mommies who find wonderful things to do and find in my area. I was wondering how they were going to cut it to 3 minutes, but Skout Media did an awesome job.
I don't really feel like a "Milm" but they made me look good ;) I hope that this helps open the door for other parents looking for an outlet in the world of preemie. Whether it's looking for a doctor or therapist recommendation or somewhere to vent - we've got it all.
Always feel free to inbox me at jennifercalvanese@yahoo.com or find us at www.sr-vdcmemorial.com
Sunday, December 11, 2011
Say Wha?
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| Say What |
I see a very bored 5 year old yet again proving to everyone that yes indeed, she can hear us. No fear of the little booth, no fear of the ear plugs. She's been there before and she's had worse trips here. I see a kid who is telling them "flash your signs, make me raise my hand to the beeping sounds with the last bit of dignity I have left today so I can go out to lunch with my Mom."
I don't believe in tagging every kid out there, but if it helps them get the services they need and their education can be better served, then sign me up. If having a kid tested for something to rule out any possibility that they are not getting the full support they need at school, then sign me up.
I keep telling my gal that SHE is the one with the amazing patience and the incredible sense of humor and I hope she never loses it. The hardest day to date with her, thru it all was the day that she tried to inquire what was the matter with her. The obvious answer is "absolutely nothing."
The reason you may not think she hears well... it's because she's not listening. It's hard when you're out of practice, it's harder when no one gives you enough time to answer and it's just plain frustrating when people just don't get it. She's smart enough to know when to engage in conversation based on whether or not she feels comfortable that you will have the ability to talk to her. She's also smart enough not to show her cards when she feels challenged by flashing an amazing smile. The kid amazes me. Look out speech apraxia - you've met your match.
Now for my rantings on Speech and Language:
Speech and language disorders are so very common in typical children, but even more pronounced in little ones who started out too early. KNOW YOUR THERAPIST. KNOW YOUR SIGNS. Do your homework - no one knows your child better than you do. Sometimes you have to dance the dance to get things done, but never lose focus. An IEP is not a be all, end all. No one can figure out a child in a few hours. We are their biggest advocates. A parent's instinct is no joke.
http://www.asha.org/public/speech/disorders/childsandl.htm
If you suspect that something is odd, even at an early age, check it out. If you think the answer you've received isn't suffice, then keep hunting and do your due dili. By the time we figured out what the real deal was, we were already doing the right things purely out of necessity. We knew how to speak the language of the therapists so we could object or agree. This is way way way important as they enter school age in setting up the appropriate classroom support. Not all speech and language programs are equal. All I know is the kid in the paperwork is not the kid in the classroom.. don't be fooled.
Thursday, December 8, 2011
Starting Over
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| happy holidays!!! |
I've decided to move out of the old blog... leaving those days behind us. Not exactly forgetting them, but needing a fresh start! Welcome to all our of newbies and welcome back to those who have followed us from jump street.
Love ya!
Our Foundation (www.sr-vdcmemorial) is directly associated with this blog. We are being featured this week on Dailybloom.net, who will also be on the Martha Stewart Show this Friday December 9th on the Hallmark channel at 10am!
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