The above is from the website of the newly formed National Council on Severe Autism. It is an unvarnished look at how hard it is for families like mine to access hospital care for our kids with severe autism behaviors. When no one is equipped to deal with our kids. When we are dealing with violent outbursts, a growing person’s refusal to cooperate, self injurious actions—I often wonder: when others do not want to accept the responsibility, how do they think we are coping?
Because so often, we are not. And we are not trained either.
I don’t talk much about A’s hospitalization because it was so traumatic. Part of the reason it was so awful was that there was so much judgment from medical personnel. And they could not handle him, so we kept constant vigil till we nearly broke from the exhaustion. Plus, we don’t have any family in New Jersey, so we were straining to give R a normal routine too, and all the stuffing was leaking out of us.
I urge you to follow the above link. The seriousness of the issue cannot be emphasized enough. I know so many people want autism parenting blogs to say treacly, sugary things. But many of us wonder how we are going to survive the journey, and we need more from our communities than “Why aren’t you being more upbeat?”