If you are reading this, PLEASE read it with an open heart, so that you can understand why it hurts.
There are actually quite a few lists out there about this topic. I actually wish there weren’t. I wish that empathy wasn’t just a word. I wish empathy would take over some people before they spoke. Unfortunately, it doesn’t. And we live with this almost every day. I say we, but no one ever seems to say these things to my husband, so I will write this post solely from my perspective and my experiences.
I don’t believe these people intentionally want to be mean or cruel. But it hurts, none the less.
So here is my list of things that I have been told. In no particular order.
“We talked with someone who works with those kids. They will snap out of it.”
Unfortunately, the individual you spoke with isn’t very informed about autism. Which is sad and terrifying to me as a mother because they are currently trying to help these children based on little or incorrect knowledge, methods and practices.
Autism is a life long disability. Yes, they will improve, but every person affected with autism does not improve at the same rate, or to the same extent. Currently there is no way of telling what the future holds. To support me accept my boys where they are, and for who they are, today. By showing them love and acceptance, it strengthens me to give them what they need.
“Oh, I worked with a boy who had autism so I know exactly what you are going through.”
Now that time has passed, I am able to respond to this. At the time I was stunned and horrified. Most mothers have an emotional attachment with their children. When the child is in pain, the mother can almost feel that pair herself. Working with someone else’s child who has a disability gives you the gift (yes, the gift) of being unattached. You do not feel the same pain, anguish or despair because your child cannot express what they want and need. And therefore you are able to honestly do a better job than I could at that time.
To moms who are doing this yourself, because you have to, because there is no one there, my prayer of strength is yours. And I do not mean that lightly or flippantly.
“I thought you were more of a go-getter. I’m surprised your aren’t more involved!”
This was especially difficult as I had not seen this person since the boys had been diagnosed and this was the first thing he said to me when meeting. No, hello. No, hi. No greeting hug. Just bam!
I look back to the first probably three months of intervention and marvel at how much progress the boys have made. And how proud I am of them.
Writing this is also difficult for me because I do not trust you enough to reveal either the extent of the boys’ struggles or the depths of my pain and fears. This is still too raw, and too intimate. And we have been doing this for four years. I don’t trust you that you won’t share these things as gossip as opposed to compassion. Essentially, I still don’t trust you. Until you respond to my boys with any amount of effort, I do not trust you. Until you respond to my boys with something more than, “Hi boys”, I do not trust you. Until you respond with something other than an awkward stare, I do not trust you. I will not let that wall down. I will not let you in. And by “I”, I mean I will protect my boys from you at all costs. Your words and actions hurt me, but I will NOT let them hurt by boys. And you will not be welcome in my home. In their home.
That last paragraph drained me. All I can give for now.
