In which I say, Stop it!

So this morning, as I was perusing the Facebook, I came across this link 100-ways-to-be-pro-life (This is not going to be an abortion discussion). I read down the list to #20 and I stopped. And I am going to tell you right now, and please listen - DO NOT, EVER tell someone that their autistic child is a blessing. DO NOT propagate the nonsense that people who have autistic children are somehow lucky because they get to be blessed with some kind of eye opening, world changing, other-human.

The child may be a blessing, but autism is not. I am telling you this fresh from an evening during which I discovered that my 14 year old son not only smeared feces all over the hall and the bathroom, but he used the handle of one of my soup spoons to get it out. My spoon. People eat with it. In his butt. Are you listening to me? Do you understand what I am saying to you? This is every day. There is poo all over my house on any given day. I walk around sniffing like the Child Catcher, looking for it every time I walk into a room. It's in his finger nails, it's on his clothes, it's everywhere. It's gross. It's gross and he has no recollection of doing it, so how do you make that stop?

The child may be a blessing, but autism is not. I know this because he steals food and then he hides the evidence in cracks and behind furniture and under beds and I find it when I vacuum or when we have an ant infestation. Again. Entire bag's worth of candy wrappers or piles of Freeze Pop tubes. They can accumulate in one night. But of course he had nothing to do with it. So now there are no treats in our house, but there are other children, who have been let down again because of autism.

The child may be a blessing, but autism is not. Come look at my furniture. Look at the holes cut in my couches. Look at the stack of mattresses in the garage that he has destroyed.

The child may be a blessing, but autism is not. He has a brilliant mind, but he can't learn the simplest of tasks. He can't sweep a floor. He can't rinse a dish. He can't be left alone, but he dislikes most people enough that there are very few babysitter options. He has been in therapy for YEARS and he doesn't change, because we are all wrong. There is nothing wrong with him, his father and grandparents and therapists and doctors and I are all involved in a grand scheme to "change" him.

The child may be a blessing, but autism is not. We are broke. I can't work. Our entire lives revolve around him. Around making sure there is someone to take him to therapy, to answer the phone when the school calls, to make sure he doesn't have to come home to an empty house, to deal with his bad days, to try to judge the exact moment before a good day becomes a horrible day, and as far as we can see into the future, he's still there, doing the same things, forever.

It's exhausting. It doesn't mean I don't reveal in his triumphs. It's doesn't mean I don't love him. But calling what this thing has done to our lives a blessing is a bit much.

When you spew this nonsense, when you speak in platitudes to the parents of special needs children, this is what they are hearing:

You: Oh, my cousin's son has asperger's! He got married.
Parent thinks: I'm failing.

You: Autistic kids are SO smart!
Parent thinks: He is, and he can't function, and it's such a waste of a beautiful mind, and it makes me cry, and I'm failing.

You: Autistic children are such neat kids!
Parent thinks: Are you out of your mind? Have you spent time with any? I wouldn't wish this on my worst enemy. I'm failing.

You: Educate me about autism.
Parent thinks: I am suddenly exhausted.

You: What a blessing!
Parent thinks: This is a blessing? What did I do in a past life to deserve this blessing? Whatever it was, I am profoundly sorry! Please, just... help, because I'm failing.

You: My friend's autistic kid is amazing at ___________. You should get your son involved in that.
Parent thinks: Oh yeah, because all autistic kids like the same thing and I have infinite resources and I really need one more place to drive and sit and wait every week. Oh my god, my kid isn't "in" to anything, I'm failing.

You: Bless your heart/you are so strong/I don't know how you do it/you really have your hands full...
Parent thinks: I'm a fraud. For some insane reason, this person thinks I'm not internally collapsing and that I have a clue what I'm doing. I am not strong, I am terrified and defeated and failing.

You: You should enjoy every minute with your kids.
Parent thinks: There are very few minutes that I actually enjoy with him. Between the mess and the crying and the arguing and the sensory stuff and the blame and the literal thinking - I'm just surviving, and I'm failing.

You: He doesn't look autistic.
Parent thinks: You think I'm lying? Fine then, you take him.

You: You should try ____________ therapy/group/clinic/home/doctor...
Parent thinks: Again with the infinite resources/do you seriously think I haven't?/I'm probably failing.

You: Oh, he'll grow out of it/you should just love him more/more discipline!
Parent thinks: do you even hear what you're saying to me right now? Are you actually going to stand there and attack my parenting and my love? Oh, why, yes you are. I feel like shit and we can no longer be friends.

Those are the bad examples. Don't do those. And not just to the parents of autistic people, don't do them to parents of kids with Down's, or CP, or MD, or spina bifida, or Cornelia de Lang Syndrome, or any other special need. Do not do it. NO.

Here's what you should do, and don't do this unless you really mean it.
You: Would you like to have a cup of coffee and talk? I can meet you where ever is easiest for you.

And then, be prepared to listen. Not to offer advice or opinions, but just listen. Understand that this person may be mourning a child they thought they were going to have, or an amazing 2 year old, who suddenly disappeared, along with a lot of hopes and dreams. Understand that this person probably loves their special needs child harder than they love anyone else in the world, and they may very rarely feel loved back. Understand that being the parent of a special needs child is a very lonely place, and a lot of parents slip into a self imposed exile when their kids are little, because they take so much energy, and that is a very difficult place to get back from.

If you aren't prepared for this, then when you discover some one's child is autistic (or anything else) simply say, "Oh, I see," as if they just said, "Suzy is allergic to pineapple," and then try to carry on a normal conversation. That's it. Simple. Perfect.