WHY DO WE WANT TO EDUCATE FAMILIES?

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Why do we need to share our knowledge with other families of children with medical complexity?

Everyone expects to have a healthy child. 

But, what do you do when you are told your child has a rare disease and will likely have lifelong disabilities? 

What do you do when your child is having up to a hundred seizures a day? How do you find the right doctor for such a rare disease? How do you manage going to specialist after specialist and balancing a revolving door of therapists coming into your home? How do you find someone qualified to help you take care of your child who needs constant medical supervision so you can get some sleep at night?  

There is no how-to book on navigating this journey, and there are so many intricacies that you wouldn't even realize. 

Did you know that crossing the border into a neighboring state can drastically change services for a child with disabilities? Because of this, there was a time when my husband commuted over 2 hours to work in another state to avoid losing services for Nikhil. We were forced to choose between living close to family and friends and having the support systems Nikhil needed for day-to-day living.  Many parents of children with complex medical needs are not aware of these state differences while those that are utilizing services in one state are terrified of moving in fear of leaving behind services for their child.

Finding school placement was another challenge we encountered. While many school districts push for inclusion of children with special needs with typical peers, the truth is that supporting children with intensive needs in their neighborhood school is rare. It is overwhelming to determine the right school placement and is even more difficult to learn the available supports in a particular school district until you have already moved into it. 

These are just a couple of examples of things you may not realize about parenting a medically-complex child.  

In 2019, we created a website to help parents who are new to their journey by sharing our knowledge at https://specialneedsgps.com/. It includes information such as home and school supports, finding doctors who treat rare diseases, figuring out the most appropriate adaptive equipment for a child, and much more.  We hope to continue to educate families of children with medical complexities through our blog and educate the community through Team Nikhil about the challenges they face. 

We invite you to access https://specialneedsgps.com to see the wealth of information we are providing. If you are a parent of a child with medical complexities and wish to share knowledge with other families like you, please contact us!