I follow a number of pages on social media where the parent is writing about their experience parenting an Autistic child. Yes, I worded it that way on purpose. Unless you, the parent, has Autism, you are not an “Autism Mom” or “Autism Dad.” The story isn’t about you if you are writing about your children.
I have been following one writer for almost 5 years now. I’ve read about the shock of diagnosis right through today where the child is doing things the parent was told would never happen. The parent is respectful, in my opinion, not posting pictures or stories that might be a problem for the child later on. Yes, it is a carefully edited story. I don’t feel “left out” because I’m not told about the hard days. I know they exist just like the hard moments before something amazing happens. There were times I wanted to comment about how every person is unique and “don’t stop believing” should be a theme song. I read how the writer thought A$ was a wonderful organization straight through the eye openers and now the grass-roots movements the writer is involved in. These movements are making a difference…tracker bracelets and software for elopers, accessible playgrounds, community forums, meetings with first responders and training school staff across the district. EDIT: You can find this blogger at Flappiness Is.
I just started reading another writer on the recommendation of a friend. A very different perspective. This writer posts 3-5 times a day…the good and the bad. There are other family factors at play, but I know far more about this family than I probably should. There are happy photos right alongside meltdown photos. The writer talks about how exhausting parenting Autistic children is. The writer frequently states “how damn hard” raising a child with disabilities is (the writer’s words, not mine). The writer has no time for themselves because they are always playing catch-up.
Two writers. One sharing the story and their personal growth. One over sharing and unable to enjoy life. One raising an Autistic child. One being an “Autism parent.” Can you see the difference?
One writer choosing to listen to the child. Choosing to recognize that Autism is a spectrum. Understanding that the child was diagnosed at one stage of the spectrum, yet seems to be moving on to places that were thought to be inaccessible. Listening to other voices and finding their own in support of their child.
Yes, it’s been five years of growth for the entire family of writer #1. Family life can be fulfilling or, like writer #2, you can let it suck you dry. I’m not saying there are no “hard parts” to life. I am saying your response to the hard parts impacts how you feel about your child.
As April begins, realize that the audience for A$ is writer #2. The fear, the struggling, the inability to enjoy your child. That’s what A$ stands for. YOU deserve a break instead of having to muck through this dreadful life. That is the message.
I chose writer #1. I chose to work with my children to help them become the best people they could be. I chose to help others see that my children are not diagnoses. They are not statistics. The world is a better place with my children in it. I’m a better person for walking beside them. There is no room in my world for A$.