The other day I posted a link on Facebook to an article written by my friend the Domestic Goddess and posted on the website Many Hats Mommy called "What to Say and What NOT to Say to a Family Dealing with Autism. I posted it because I thought it was awesome, but my friend reminded me of the conversation that we have had before, that he often feels intimidated by parents of kids with special needs because he hears us (me) complaining about NT-only parents, he wants to help but he has no idea what to say or do about it and he's afraid he's going to do or say the wrong thing. He suggested that maybe he should write a list in response to the article. I said: BRING IT ON. And so... here we are....
What to think about people who say what not to say.
Jillsmo asked me to write a little thing about people who do not have special needs children and how I felt that often, encountering parents with special needs children can be an intimidating situation. We've had this conversation a long time ago and she, as I recall, had not considered the intimidation factor. Since the list of "Things not to say to parents with Autistic children" list came up I felt it might be constructive to point out what not to think about the things people say to parents with Autistic children.
But before I go into that, I thought I would try to put things into perspective with a few examples that have nothing to do with that at all. For instance. I work for FedEx. FedEx is 6 different companies; UPS and the Postal Service are just one each. So, sometimes people call the wrong FedEx for their needs and I am often called upon to go on Express pickups, or Freight pickups: I am neither of those. Some people expect a Saturday delivery, that is Express and Home Delivery: I am neither of those. Often I am put in a position to have to explain that to customers because our main office does not. Now, I could get very frustrated that people don't know the difference. But that is expecting a lot. Since the other companies like UPS are not like that.
People react differently, but most feel stupid for not knowing. That is wrong, it's not their fault; we are confusing. It doesn't stop other drivers from being upset and frustrated by all the "wild goose chases" they have to go on because people are not informed. That is also wrong.
There are many situations and many jobs that have this problem; you hear it all the time. "Why don't people read the sign that the door is locked from the inside of the clinic?" ... well, people don't expect to be locked in, so they still push at your door in futility. "Why don't people know that you have to drive all the way around the school in order to pick up your kid? The arrows are painted!" Well, people just don't see why you would have to do that since the front door is right there!
I could go on, I am sure many of you have similar rules that people just don't get at your work or school, it's rather common. This brings me to the point that I am feebly trying to make. People don't really know what to do or say in situations they are unfamiliar with, but it's not their fault. Yes, they are ignorant, yes they don't often seem to "get it," and yes, they often do or say the wrong thing. It's because these situations are intimidating.
Would they rather say the exact right thing? Would they rather feel smart because they are fully informed about the situation? Of course.
I completely understand that it is totally frustrating for those of you who are put in the position of having to either explain or just ignore the ignorance displayed by people about the situation you know about or are in. They don't seem to get it and you totally do get it but they seem unwilling to get as informed as you are. But again, generally, people almost never, in their daily lives, have to really know what to say about or to parents with special needs children.... it's not their fault.
So what do you do?
Well, adjacent to the list of what not to say is a list of what TO say, that is great. But as most of you know, very few of the people you encounter will ever have the opportunity to read that list, and now you are just stuck being frustrated.
So, here is a list of things you might consider when someone says the wrong thing.
1. "G-d doesn’t give you more than you can handle."
O.K. this is little more than a platitude. But what the hell do they say? They are intimidated by your situation, they have no idea what to say, they can't imagine what you are dealing with, but they are really trying to relate. Many people have had situations that seemed rather daunting and they use this little saying to get them through. They are trying to say that many of us have stuff to deal with and often times we do not think we are the strong ones until we have those situations thrust upon us, then we kick in and deal. You are not the special strong ones, you are people who were forced to be strong because you have no other real choice in the matter. God knows that many of us have that strength within us that is rarely tapped... but it's there. Some can't, though. They fail and fall, crumbling at the daunting task. So that statement is factually incorrect, but it is comforting to those who need to believe it.
2. "Your kids are so lucky to have you for a Mommy!"
O.K., well ... they are. Even if they didn't have Autism, they are. However, if you suck at being a mom with an Autistic child, that statement acts as a cheer leader type of encouragement. That's all that is, take it as a compliment. My kids are lucky to have my wife as a mommy. If we gave them up for adoption, they would be lucky to have their adoptive parents as parents. Look at it this way, if you are beating your kids in public and only had them for the government check otherwise you would have aborted them.... then you would not get that statement from anyone.
3. "I don’t know how you do it! You are so strong/amazing/such a good mom!"
Listen, here is the thing. Children are abandoned, they are mistreated, they are stuck between feuding parents, left alone to raise themselves, ignored, abused, and pushed off on nannys and day care. People know this, and frankly, lots of people are guilty of it. When we had our first, we were completely unprepared for a baby. Our work schedules simply didn't comply with our parenting obligations so we handed him over to day care. It killed us, but at the time we had no idea what to do. We got better at it later, but we missed so many of his "firsts." That is what they are talking about. They are jealous of your shitty situation because they couldn't make that kind of real decision based on priorities that are important. Maybe you don't feel special, but you are, own it and deal with it.
4. "He’ll talk when he’s ready".
O.K. this is stupid. This is an attempt to pretend to actually know something they don't. But it's borne from experiences where "normal" kids just stubbornly did not talk when the "Dr. Spock" book said they should. Also, it is meant to be an attempt to give you an out, that you are not a bad parent, that some kids develop on their own time. They are trying to ease what they may perceive as your trepidation about your childs development. They are trying to be nice.
5. "He’ll eat better eventually or when he is hungry."
Same thing. They have no idea what Autism is. But again, "normal" kids eat weird shit all the time. They are only speaking from the limited experience they have. However, this is just the kind of statement that begs a tutorial about Autism; if you have the time, there is a great opportunity to explain that to them... nicely! You always want more people in your corner than people who you told to go read something because they are really getting on your nerves with all the idiot crap.
6. "Can’t you just discipline him?"
Hey, this is not just yours! LOL!! Don't think for a second that people only say that crap to parents with special needs kids. Look, unless your kid wears a helmet and drools while rocking back and forth, people can't readily identify what his problem really is. The immediate assumption is that you suck. So... O.K. go ahead and spit in their faces, they are assholes. I think my response would be "Maybe you could work on your self control over commenting on other people's parenting skills, we could then work together on the same issues."
7. "He’s manipulating you. He’s just trying to get attention. "
Free parenting advice is worth every penny you pay for it. This sounds like a mother comment; or at least my mother in law anyway. She has lots of shitty comments like this that roll off her tongue when I'm not there. Oddly, I never hear them. Why? Well, because I am an asshole, and by that, I mean that I have no qualms about being an asshole in defense of my kids. But seriously, they are just trying to help you get your kid through their own experience; young mothers seem so clueless and fearful. It sounds shitty I know, but they actually think they are helping.
8. "I’m so sorry!"
Well, I feel sorry for people who feel they need to say this, but really, let's get real here for a minute. You know damn well that if you had your druthers your child would be a semi-genius with all the "normal" kid stuff: not for you, but for them. It's hard to watch them struggle, it's hard to see how society will not understand them, it's hard to know that they may not be choosing between Yale or Harvard, that their future really depends so much more on you than on other kids. They are really "sorry." I know, it's rather insulting. You love your child and he/she is the best thing in your life, but give people a break; maybe they understand how much harder it is?
9. "What’s WRONG with Him?"
They don't know. They just don't. And they have no idea how to express that in a good way. Some people are stupid, some just are uninformed. They just... do... not... know.
10. "Normal kids do that, too!" Or, "Oh my kid does that! No big deal!"
Alright, I have used the word "normal" pretty often in this little writing, and that, I suppose shows my ignorance. But once again, how do I separate your Autistic child from my non-autistic child when describing behavior? Sure, my kid shit his pants every day.... every... damn.... day. He wouldn't bring an extra set of clothes so I had to go to his school... every day... to find him in the bathroom and give him new pants. Other parents didn't have to do this. Can I now relate to parents with Autistic kids? Probably not, but you don't know what my kid does. We are trying to include your child in the group, not dismiss your childs special needs.
11. "YOU ARE SPOILING HIM."
Yeah, I don't know any parent who didn't have to hear that at least once. This is where I say "get over yourself." The fact is that being a parent is really fucking hard. I would love to be able to relate to a parent with an autistic child and be the one who really gets it, even be able to watch your kid every so often. My kids are so cool about all that, I am very proud at how non judgemental they are. We (my church/school community) know 2 Asperger's kids, we like them, they are weird, but we still treat them like ever other kid. My son has a learning disability: he can't read, but he is still accepted. We (those of us who really want to be informed about Autism) are here for you. We are good people. Sometimes we say stupid things, but let us in. We can help.
That's all I wanted to say.
