Last week I wrote a blog entry about a poor parenting moment I had. I laid it all out. It wasn't anything way out there. It was about a moment of struggle that I had when my Beans was having a what I call 'not having it day' that was in more of the week than a day. He was not having clothes, and not wanting to move when asked. I was late for everything that week, and some things were really important. Days on end like that had me at the end of my rope. I yelled at him, and tried to pick him up, which did not go well, since he's about the size of me. One day a few days ago he decided he was going to just park it on the middle of the parking lot. Just booomp., and there he is. Solid as a rock. Nothing I can do to change it. He's just there until he decides not to be. There's not a doubt in my mind if he was smaller any parent would just pick him up, and move him. The thing is as his body grows, cognitively he isn't.
In any event, I posted that post knowing that in the autism community there had to be others struggling with the same thing. Maybe their children wasn't as old as mine, but they had to experience this behavior, and at times of constant struggles I am sure that most parents have yelled. Yet, when I posted that entry I got very little feedback. When I did, it was mostly hinting at pity for me, or maybe disdain? I am not sure, but I do know I got little support. It was awkward, and the way I felt judged was not helping, so I took it down.
This got me to thinking, and wondering.
When did it become a taboo to say you're struggling with your special needs child?
If I were to post about some awesome new thing one of my boys did I would get all sorts of feedback. That is a good thing. Letting others know that we are happy for them is always a good thing. It's also not everywhere that we can talk about our children's little milestones, and know that other people are really appreciating what we're talking about. Other autism parents know how great some of those little things are.
However, we need to be able to remove the taboo of an autism parent being able to say that they're
Having a bad day.
Encountering something we don't know how to/can't handle.
Wanting some advice.
Needing to know they're not alone.
Upset, and overwhelmed.
I know that we as a community have worked really hard to advocate positively for autism awareness, but that cannot overshadow the fact that sometimes living with autism, whether it be first or secondhand, is hard. I have even heard from autistics themselves that say they're ignored when they ask for help, because it tends to shatter the autism parents idea of them. They want to see the autistic person as an inspiration. I know as we move away from the deficit model of autism we need to really not go too far into the other direction, and ignore the real needs of parents, and autistic people who still need support, especially in a society that has not yet achieved the plateau of acceptance, and inclusion of disabilities.
I fear we leave parents struggling in shame when they don't feel like they have a handle of being an autism mom like everyone seems to when we never talk about our less than stellar parenting moments. When we tend to look the other way when autism parents are needing help, or support we can't foster the positive changes we aspire to. In order to get a real, meaningful change in how we view autism we must learn to address it as a whole, and not only the times that make us feel warm, and fuzzy. Otherwise, it is just superficial change that skips any problem solving.
So, I am the first one to admit, as much as I know about autism, As much as I know about advocacy. As much as I tend to be the last one to lose my cool. I don't always have it all together.
Sometimes, I yell.
Sometimes, I do things that I know better than to do, but in the heat of the moment I lost my common sense, and made the whole situation worse.
Sometimes, I don't know what to do.
Sometimes, I get so overwhelmed that I take the easy way out.
Sometimes, I need advice, help, and a new way to look at things, and that is okay.