When we first started our journey with Gavin and his diagnosis we didn’t know anything. Well aside from the basics of him being a baby and how to care for him in terms of feeding, bathing, diaper changes, etc. But beyond that –when it came time for specialist and therapist appointments and specific questions we needed to ask – not a clue. I was aware of what CP was but how it would impact Gavin or our family – nothing. Insurance…? I’m lucky I know the basics of plan coverage but how to get devices or services approved – seriously? I would have had a better chance of guessing the nuclear guidance codes than figuring that mess out.
Literally, we knew nothing other than basic care for Gavin – (aka care you would give to an able bodied child). We have asked waaaay more than our “20 questions” at any given appointment. But along the way something happened. Something that up until recently I never thought would actually happen. We have learned enough and been through enough that we have become the “go – to” family. We are no longer the “newbies” looking to everyone else for help/guidance (although there is still plenty of that going on, trust me). We still ask questions – but we’re closing in on 10 an appointment vs. the 30 – 40 we used to ask.
Through our experience with Go Baby Go (the cool adaptive car Gavin received) we have been able to help an occupational therapy department convince their board of directors that the program deserves a shot at their hospital. Not only is it an excellent teaching opportunity for therapy students and their teachers but what it provides to families of mobility challenged kids is beyond measure.
And then about three weeks ago, one of Gavin’s hospital PT’s emailed asking us how we were able to get his stander approved after two internal review denials. She had a patient in a similar situation that was being denied a device and they didn’t know where to turn. They came to us because we knew – and not only did we know what to do, we knew how to win (or rather the folks to turn to in order to win). What we were learning on our journey was going to help another family get a device they needed for their child.
As we start the transition process for Gavin to enter into our school district’s pre-k program (when he turns 3 he is booted from the Birth To Three program and local school picks up services) I have to say, we have come a long way. Looking back I am amazed at how much we have learned (I am getting pretty good at navigating health insurance plans if anyone needs help!) and what our family and most importantly Gavin has accomplished. And if our struggles, defeats and achievements are able to help another family in some small way – make their life just that much easier, well then that’s just icing on the cake (chocolate of course!)