Tuesday, July 19, 2011

The R-word and a few other things

I read a great Stark Raving Mad Mommy post this morning titled Domestic Enemies of the Special Needs Mommy and wanted it to post a link to it here: http://www.rantsfrommommyland.com/2011/07/domestic-enemies-of-special-needs-mommy.html. But I have to admit that I do so tentatively. I really love her blog, her frankness, her humor in the face of difficulty, and her ability to say things that I might think now and then but usually don't say because I would feel like I was attacking people who don't know any better and possibly attacking people I know well, like and even love. Because the thing is, it was only about a year and a half ago that I only vaguely knew what autism was because of a few articles popping up in Time, Newsweek and parenting magazines. (I remember reading that Newsweek article when Lu was 6 or 7 weeks old and thinking, wow, that sounds so awful. I can't imagine how horrible that must be. Little did I know I was about to find out.) Before experiencing this first hand, I had no idea what this side of the world is like. I did not know who these kids were or all of the ways in which the world can seemingly turn on them and their families when they are dealt a difficult hand.

Often when someone says something insensitive or inappropriate, or sometimes even just outright rude and mean about our kids or our parenting of them Stew gets really angry and says "Don't they know what we're going through?" To which I have to reply, "No, of course not. And not all that long ago neither did you." The truth is that if one of my close friends or family had come to me to tell me that their child was diagnosed with autism the way Stew and I did back in April of 2010, I'm not sure that I would have known the right thing either. And honestly there isn't really an exactly right thing to say at a time like that. I'm sorry or I'm thinking of you all are probably the best. But most responses fell into one of two categories. Both of which I responded to badly. The first was the disbelief/denial category of telling me that autism is horribly over-diagnosed these days and that they are SURE that Tallulah is not REALLY autistic. Doctors just like saying that. It's probably just a phase. All kids do those things. It's nothing to worry about. The second category was the 'I could have told you something was wrong with that kid ages ago' category. 

My response to the first category was anger. Do you really think that we would have gone through all of this, all of these referrals and appointments with neurologists and psychologists and early intervention screening/evaluation panels just for fun? Do you really think we would lightly and purposely try to get our daughter diagnosed with a serious and life long condition just for kicks or attention? No one wants to believe that something is really seriously wrong with their own child. We went through months of denial and excuses and trying to find explanations of what was going on with her before finally resorting to the professionals to help us out. We exhausted every avenue we could think of before arriving at this very difficult moment of telling all of our nearest and dearest what is going on with our child and our family. We would not be doing this if the diagnosis were not certain. And believe me, the doctors do not want to tell this to any parent alive. I actually found it really frustrating how long it took for anyone to even say the word autism to us because they are all so hesitant to make the pronouncement until they are completely and absolutely sure. Can you imagine having to give this kind of news to someone? Short of 'I'm sorry but there has been an accident...' or 'I'm afraid the operation was not a success..' this is about the worst bad news anyone ever has to give to anyone else. 

My response to the second category was also anger. Oh really. You knew my child was autistic all this time and just sat there on that information, wasting valuable early intervention time? You were able to identify this before her parents, pediatrician, and even the Early Intervention program and psychologist? It took months of tests, observations and evaluations to come to this conclusion. And yet you could tell just by looking at her? And the thing is, that even now, most people still can't tell just by looking at her if they catch her in a calm and engaged with a toy moment. She has no physical markers of disability (unless you can see the Mic-Key button of her G-Tube protruding through the front of her dress). She is incredibly cute and after over a year of intensive 35-40 hour a week behavioral, speech and OT therapies she now is able to at least briefly look most people in the eye. She can even be prompted to say 'Hello ______' to most names and 'Bye Bye' when it is time to go. I imagine that it is possible that for people who work with autistic kids every day, Lu may have been an obvious case to some. To me however, who hardly knew what the word meant, I didn't know what autism looked like and having someone tell me that they knew something was wrong with my precious baby girl all along, when I only had doubts and nagging fears that I pushed aside most of the time, well I guess it hurt my feelings and my pride in trying to be a good mother.

So what I really want to say to everyone who responded to me in those first few days, weeks, months and who I may have driven away with my anger about whatever response you had: I am sorry. I am truly sorry. The wound was still too fresh. I was in too much pain. I know that you were trying to be helpful and offer comfort, but my eyes were just too glazed over to see it and accept it. I was like an animal with her foot in a trap; ready to bite anyone, even a hand offered in aid. So please, if you are a friend who has been out of touch since I bit your head off over comments about Tallulah and autism, feel free to get back in touch if you want. The special needs world is isolating and we can all use all of the friends we can get. And for the most part I am not nearly as sensitive about things as I was in those first few months. I have grown accustom to so much that was foreign back then. Only a few things make me flinch now and bring tears to my eyes.

Which brings me to one last point I want to make. It is about the R-word. I feel like middle school was the main time in my life when I heard it a lot. 'That's retarded', 'what a retard', 'yeah you're special... SPECIAL ED!'. It fit right in there with Polack jokes, fat jokes, gay jokes and the rest. I don't remember ever saying it much, or really any myself, but I do remember tolerating it, laughing a long, just like everyone else. The special education room at my school was for the profoundly disabled. Children in wheelchairs, children who could barely move, who could not feed themselves, who could barely if at all speak any words. I didn't understand their conditions or their lives. It bothered me if someone used the word about one of them because they so obviously had no control over their situations, but regular kids calling each other retard seemed kind of harmless back then. I obviously was not the most sensitive kid regarding this, but I didn't feel like I was among the most insensitive either. Fast-forward 30 years. Not long ago I was hanging out with someone I care about deeply who tossed off the word like it was nothing in conversation. 'Oh my god that is so retarded!' I know she didn't mean to upset me or anything but it hit me like a wave of ice. I fumbled through trying to explain that you just can't say things like that anymore and she was mystified. But Tallulah... 'Oh she's not retarded!' I explained that her diagnosis of autism does include mental retardation. 'Oh come on, she's not. Just look at her. You can tell.' But the thing is, you can't tell. Autism is a developmental disability. Lu's mental age is significantly younger than her physical age. The Department of Developmental Disabilities through which we get so many of Tallulah's services was only recently renamed. It used to be the Department of Mental Retardation. So please at least think about this. Don't call your computer retarded when it isn't working right. Don't call your boyfriend retarded when he forgets to call or txt. Don't call yourself retarded when you forget to do something really important. Because what you mean is faulty, stupid, defective, non-functional. What you mean is an insult. And what the word actually refers to is my sweet Tallulah and other people like her. It is hurtful and demeaning. And we are all better than that.


Teddy said...

Jen, I love this post. Hope you don't mind, I'm going to put a link to it from my next post. The "R" word. You've said everything I have felt the last couple of years also. You put it into words so well; the little things that just add to our heavy load.

Hope you guys are doing good!

babyracer said...

Thanks Teddy. I hope that it was clear from my post that I am opposed to any use of the R word. I just got an email from a friend asking if I am trying to reclaim it. No. I am not. I would like it to be filed away under things human beings now know better than to say along with the N word and others like it. I don't like that it is listed on Lu's diagnosis and hope at some point to have it removed. The reason I wrote the word so many times and tied it's meaning to Tallulah is because I think when there is a face associated with a slur it makes it harder to say. People who have friends who are gay are less likely to use gay slurs. People who have a racially diverse set of friends are less likely to use racial slurs, so my hope is that people who know and care about Lu will think twice before using the R word. The main reason I bring this up at all is that I don't ever want her to hear it and be hurt by it.

I also was not trying to make anyone feel bad about anything they said to try to comfort us after Lu's diagnosis. Like I said, there isn't really a right thing to say. I was just trying to explain my reaction and apologize for it because the last thing I want to do is drive well meaning friends away from our lives.

Thanks for reading