So for us, we have had help along the way. Not like there has been a person that has helped guide everything we do, but there have been people providing tidbits of help along the way. You know what, I would absolutely LOVE to have a person who guides us through all the steps from identification of special needs to therapy suggestions to diet suggestions to test suggestions to specialist suggestions to best help for working with schools to the questions to ask at each phase to when to not worry and just be. The best name I can come up with for this role is a Personal Navigator. If this person exists, please private message me :).
I think one of the biggest issues is knowing what questions to ask and how to ask them. I wish there was a place to go to get most of the answers and a place to go to help calm your nerves and to help you not to worry. Why does this journey have to feel so unique, complicated, and sometimes lonely? I want others to not have to feel this. I dream that personal navigators will be more common and that these people, whatever their credentials are, will be easily accessible to parents with children with special needs regardless of financial means, physical location, or physical need.