Monthly Archives: April 2019

I’m tired of autism…

I’m tired of autism. I’m downright exhausted.

I’m tired of people telling me how far my son will go simply because they see his ability to absorb a thousand impressive facts even if he struggles to find productive ways to use them–which is what would make him successful.

I’m tired of people telling me that “If I would just…”, then my son would be “normal” as if he has a behavior problem rather than a neurological problem. All the worse when it comes from another spectrum parent that has a kid with a different flavor of autism than mine and thinks that’s the result of their efforts rather than their luck. Or relatives that see my son once in a blue moon.

I’m sick of people telling me that my parenting is the reason for my son’s behavior and go on to suggest things we have ALREADY TRIED AD NAUSEUM because they REFUSE to believe that we parent this way as a RESULT, not as a preference or an option.

I’m worn out of having parents tell me “But my kid does that, too–it’s normal” as if I have a neurotypical kid and am making him out to be impaired when he’s not.

I’m enraged every time I hear “but look how far he’s already come–he’ll be fine” when the person has zero concept of what life was like during the time of optimal brain development that got him to where he is now, and their complete ignorance at the reality that NONE of those advantages or resources exist for him for the next 4 years before he is legally an adult.

I’m exhausted from nights without sleep wondering if my son will actually be able to overcome any of these things or if he is going to remain impaired and potentially not be able to live independently.

I’m frazzled trying to figure out how to provide for his long-term care if he can’t because we have a hard enough time trying to provide current-day care for him and think about our own future.

I’m frustrated with the lack of resources for kids like my son who are not severely impaired; and the viciousness with wihich parents of more severely impaired look at me for trying to help my son because they “would give anything for their kid to be where mine is” as if I’m an ingrate and my son undeserving of help because he’s not “impaired enough” even though his daily living and long-term independence is impacted.

And I am overwhelmed with anguish when these fears and frustrations come out in ways that make my amazing son feel less than the miracle that he is; and the toll that it takes on his sense of self when he can’t do things that other kids are capable of and we are unable to find things to help him move more freely through the world.

I’m tired of autism. I’m downright exhausted.

#FUA
#beawareofTHIS

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