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I am passionate about:
Supporting families of premature and medically fragile infants during their transition from the NICU and through their early years of life.
Pediatric Nurse Practitioner/IBCLC
Special Kids, Special Care Inc.
"Passionate and Committed"
I started Special Kids, Special Care as a non-profit in 2011 after I "retired" so that I could address issues facing families as they were discharged from the NICU and so that they could receive support, education, and resources that would optimize their infants development and well-being.
Jackie…Pyramid Training and that is where I envisioned the need for any parent-peer mentor program to have access to others with specific education and training for those situations that are more difficult or complicated. As it is parent groups that are isolated can offer emotional support, someone to listen but may not provide information as we learned in this training. We also built in reflective consultation for this purpose. Details are just exactly how we might do this. So glad you reminded me of this resource as we don’t want to start from scratch. Wish we could add into the proposal all the different resources we are now learning about from this grant. Thank you again for this wonderful program. Barbara
Manisha You have certainly developed something that parents want. I noted that they asked questions – what is normal. We have learned from a family of a child w/ special needs that most of all they also want to know what is the typical progress because children don’t always follow the “normal” path. We have been thinking about how to help parents understand the simple concept of what goes before the milestones that parents usual look for. E.g. all the steps that a child has to accomplish before they walk. Also, most important is not the toys to the interaction with their parents that is critical. Yes, I think it would be great to have tools like this to integrate..
When you talk about working together, how does that happen. Barbara
Betsy….. I like your idea very much and yes it does fit with what we are hoping to accomplish – supporting parents and their knowledge and resources to support their child’s development.
We realized that we needed materials such as this for parents and were hoping to utilize those that were developed already with strong evidence and appropriate for the families whose baby was in the NICU. We just connected with First Books so that we could offer a book to families at discharge or once they are home to encourage reading to their babies.
I am learning about the Innovation Grant process and have seen other great ideas including yours that could be linked with ours. Just how that might happen is a question. Certainly to offer field testing of prototypes.