One of the things many special needs parents are lacking is a friggin instruction manual for their often times, quite complicated children.
I realize that no child comes with a set of instructions but most parents are able to muddle through.
When it comes to special needs children, it’s almost a cruel joke that they don’t come with at least guidelines. I mean honestly, who do we need to talk to about this?
Special needs parenting is hard enough as is. Parents like ourselves, could benefit from a basic set of guidelines or in structures. At least I know I would.
When it comes to Gavin, I find myself in desperate need of a goddamn instruction manual.
With everything he has going, he’s so complex and so unique that no one can really tell us what to do. For example, the issues he’s having with his heart rate and blood pressure are serious and yet because what he has is so incredibly rare, no one can tell us what do.
We’re sorta feeling our way through the dark.
We’ve decided that we are going to visit his cardiologist and find out from a cardiovascular standpoint, do we need to worry about his heart rate? If so, at what point is this something that we really need to worry about?
I need some sorta of guidance because I am completely lost right now and have no idea what we do or where we go….
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