I had only been a resident for a grand total of two weeks, and was still adjusting to calling myself “Doctor”, when one of my NICU parents tearfully asked, “So what would it mean to have a child with a trach?” While the care of the neonatologists had allowed this baby born at just 26 weeks gestation to live, his airway and lungs weren’t strong enough to allow him to breathe without assistance. While I could explain to her the medical side – the basics of the procedure, the extensive care that came with an artificial airway – I couldn’t answer the question she was really asking. What would life look like to raise a child with special medical needs? This is where About Special Kids (ASK) comes in.
ASK is a parent-led organization that helps children with special needs and their families navigate the world of disability. Nearly all the staff members are parents of kids with disabilities themselves, so they understand first hand what this life is like. They know who to call for the 2am emergency trach change, because they have already done it. They have also already worked with school systems to advocate for their child’s needs, and have inside knowledge as to who to ask. They also can be the ones to tell these scared parents facing a new diagnosis, that it’s going to be okay.
ASK provides training in navigating health insurance, the school system, and other medical aspects of care. Their parent liaisons are available on the phone, for free, as often as needed, to answer questions or just a listening ear. They can connect families with resources unknown to many that will allow their children with special needs to live as full a life as possible.
As a medical team, we can walk along side these parents to give them idea of what their child’s medical course would look like. ASK is a great partner for the daily life events outside of the hospital and clinic. Individuals with disabilities are the largest minority in our country, and they are capable of so much if they are provide with the right resources. While I can tell my NICU mom that it is going to be okay, ASK is able to show them the resources and support day-in and day-out how to make that happen.