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.
Tuesday, July 9, 2013
Tuesday, May 14, 2013
In which I say I'm sorry
Yesterday I was chatting with a mom at CMS, about mono of all things. She seemed really nice. Our children came up to the office at the same time, and we all left the building together. This mother, in the way of mothers, advised my son that he should tie his shoes before he tripped. He didn’t answer her, and I realized that my response must have seemed a bit strange, and probably rude. I don’t know who she is, and I don’t even know if she is a member of this group, but I’d like to offer an explanation, just in case.
Most simply put, I don’t care that my son’s shoes are untied. I’m happy that he got shoes on at all on any given day, and the added bonus of socks makes me ecstatic. He is not trying to make a statement. He doesn’t think he’s too cool to tie his shoes. He simply lacks the manual dexterity to tie them well enough to stay tied longer than about a minute. We have, in fact, tried the bungee ties that you mentioned. He says they are too tight. It’s a sensory thing. It does not matter that you can loosen them; he has decided that they are too tight. We like velcro, but his feet are huge, and he has to wear orthotics, so we deal with what we can find.
You didn’t mention it, but I am also aware that he looks like he got dressed out of a rag bag. That’s not a statement either. In moments of high anxiety he picks at his clothes and he picks them full of holes. We’re working on it, but we live with holes because we’re just happy that he stopped eating, literally, his shirts, and that he no longer picks at his skin until blood runs down his legs. And no, he probably hasn’t combed his hair in week. We’re just happy that he lets us touch him.
You are not the first well meaning person to point out his shoe laces. There are even more, less well meaning people, who say downright nasty things about him when we walk by. Luckily, most people are just part of the scenery to him, so he usually doesn’t hear them. I do though. I do, and every time it comes up the little voice in the center of my chest says, “here we go again,” and I suddenly feel physically exhausted. I have to decide, one more time, how to respond. What is going to make this go away? Sometimes I try the smile and nod, but there are people who are not content with that. Sometimes, I try the off handed remark about teenage boys.
But what I don’t want to do, is stand in a parking lot, and explain one more time that what you’re looking at may be all I can ever expect. I don’t want to have to tell you that my life is just about worrying about different things than you do. That as handsome, and kind, and smart as my son, my first born, is he will probably never leave home. I don’t feel like explaining that I know he just ignored you, but to him you might as well be a tree. I don’t want to tell you that he talked about killing himself for the first time when he was seven, or that kids throw trash in his lunch on purpose because his OCD won’t let him eat anything that someone else has touched. I don’t want to tell you that he doesn’t sleep at night and he walks endless circles around the coffee table. I don’t want to tell you that more than one doctor thinks that eventually we will have to institutionalize him, because there are more things, things that we don’t even tell the people who love him the most. I don’t want to have to explain one more time, that yes, he does speak very normally, and he looks like a normal kid, but not all autism looks the same. I don’t want to have to say, “I don’t give a shit that his shoes aren’t tied, you have no fucking idea about the real problems we are dealing with here!” and so lots of times, I just say nothing, and I walk away.
But you didn’t know that, and I was rude to you, and there is no excuse for rudeness. I feel badly, and I wish I knew who you were so that I could tell you that I know, and I’m sorry. I am sorry if I made you feel small, or put down, no one should be made to feel that way, and I saw on your face as you walked away that I did that to you.
Most simply put, I don’t care that my son’s shoes are untied. I’m happy that he got shoes on at all on any given day, and the added bonus of socks makes me ecstatic. He is not trying to make a statement. He doesn’t think he’s too cool to tie his shoes. He simply lacks the manual dexterity to tie them well enough to stay tied longer than about a minute. We have, in fact, tried the bungee ties that you mentioned. He says they are too tight. It’s a sensory thing. It does not matter that you can loosen them; he has decided that they are too tight. We like velcro, but his feet are huge, and he has to wear orthotics, so we deal with what we can find.
You didn’t mention it, but I am also aware that he looks like he got dressed out of a rag bag. That’s not a statement either. In moments of high anxiety he picks at his clothes and he picks them full of holes. We’re working on it, but we live with holes because we’re just happy that he stopped eating, literally, his shirts, and that he no longer picks at his skin until blood runs down his legs. And no, he probably hasn’t combed his hair in week. We’re just happy that he lets us touch him.
You are not the first well meaning person to point out his shoe laces. There are even more, less well meaning people, who say downright nasty things about him when we walk by. Luckily, most people are just part of the scenery to him, so he usually doesn’t hear them. I do though. I do, and every time it comes up the little voice in the center of my chest says, “here we go again,” and I suddenly feel physically exhausted. I have to decide, one more time, how to respond. What is going to make this go away? Sometimes I try the smile and nod, but there are people who are not content with that. Sometimes, I try the off handed remark about teenage boys.
But what I don’t want to do, is stand in a parking lot, and explain one more time that what you’re looking at may be all I can ever expect. I don’t want to have to tell you that my life is just about worrying about different things than you do. That as handsome, and kind, and smart as my son, my first born, is he will probably never leave home. I don’t feel like explaining that I know he just ignored you, but to him you might as well be a tree. I don’t want to tell you that he talked about killing himself for the first time when he was seven, or that kids throw trash in his lunch on purpose because his OCD won’t let him eat anything that someone else has touched. I don’t want to tell you that he doesn’t sleep at night and he walks endless circles around the coffee table. I don’t want to tell you that more than one doctor thinks that eventually we will have to institutionalize him, because there are more things, things that we don’t even tell the people who love him the most. I don’t want to have to explain one more time, that yes, he does speak very normally, and he looks like a normal kid, but not all autism looks the same. I don’t want to have to say, “I don’t give a shit that his shoes aren’t tied, you have no fucking idea about the real problems we are dealing with here!” and so lots of times, I just say nothing, and I walk away.
But you didn’t know that, and I was rude to you, and there is no excuse for rudeness. I feel badly, and I wish I knew who you were so that I could tell you that I know, and I’m sorry. I am sorry if I made you feel small, or put down, no one should be made to feel that way, and I saw on your face as you walked away that I did that to you.
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