When Monkey was 3 we were in the process of getting him diagnosed. We had already been through the process with Motormouth, so we knew we were looking at Autism. For those of you who have never had the pleasure of this experience, it goes a little something like this: Endless paperwork and questionnaires, asking you everything from your child's developmental milestones to their eating habits to your childhood to your husband's family's medical history (because you know all these things off the top of your head, and can fill them out in office waiting room with your child screaming on the floor at your feet or in your face because you have disrupted his routine) that you will fill out no less than 3 times for at least 3 different specialists. If you are lucky (like we were), you can take your child to a 'multi-disciplinary clinic' where all the specialists come to you, instead of you getting bounced from the Developmental Pediatrician, Neuro, Psych, etc. There are several phases of this office visit; the paperwork, the interview with the social worker, you and your child together being observed in a room with various specialists with one of those lovely mirrors on the wall, and possibly your child alone being observed in the 'fish bowl room' while some administrator attempts to do I.Q. and other testing (does it count if when your child is asked to identify a certain color block that he grabs it and throws it at the testers face? At least we know his gross motor is fine, he can hit her in the nose every time). We had a general rule with Monkey; as long as you didn't talk to him, look at him, or touch him...he MIGHT be okay. So you can imagine the thrill of several hours trapped in an office while your child is subjected to several people breaking that rule. We thought we were prepared for this experience with Monkey, after all, we had just been through it with Motormouth. We are over the humiliation and terror of being examined as parents (we know we are failures, we don't need a specialist to tell us that), and we just want someone to tell us what is wrong and how to fix it. The kicker on this is that, well, with Autism, they can tell you what is wrong, but they have no way to fix it. There is no medication, no therapy suggested (because your insurance won't pay for it anyway) no cure. You get a label, a name to call this 'thing' that has swallowed your child and won't give him back.
G and I are armed for battle. We head off to our meeting with the social worker. We are prepared. We both have our copies of our 17 questionnaires and a mental list of things we want to mention. (I wont even get into how clear it is by the differences in you and your spouses questionnaires that he really does have NO clue what happens in his house all day while he is at work) We are past the idea of wanting to present ourselves in the best possible light, we want ALL the dirty laundry aired and in her official report. If 'they' don't know who this child really is, how are 'they' going to fix him, right? So, in we go, ready to mention this, and this, and most certainly THIS....we are prepared. Until the perky little girl asks the first question. Turns out, all parents find this meeting to be an emotionally draining experience. Going through every negative aspect of your child, your home life and your (in)ability to handle it is indeed hell and she thinks she has found a way to make it a little easier for all involved. She wants to start out on a positive note. "What do you LIKE about Monkey?" she asks, pen poised. We are totally at a loss. While we were preparing to bring up all the bad things, we hadn't exactly been singing Monkey's praises. Our sleep deprived, war torn, emotionally exhausted brains struggled to change tracks. Let's see: He doesn't smile, or laugh. The only emotions he can express are anger and frustration, which are expressed constantly throughout the day and night. There is no empathy. I once fell down the stairs in front of him and realized that the only reason that he stood there watching me cry in a heap on the floor was because his sippy cup was empty and I was the only one big enough to pour him some more milk. Holidays and family get togethers were a nightmare. Monkey didn't 'do' presents. Wrapped or completely unwrapped and out of the package, it was still new and foreign and would make him scream and hit and make Grandma feel bad. I can't count how many times we all sat uncomfortably in the living room attempting to make conversation while Monkey laid under the kitchen table or in the garage screaming for 30 minutes or more until he could calm down enough that you could distract him with a snack or a movie. How closely we had to keep track of where he was at all times in fear that he would get too close to his baby cousin and push her down the stairs or hit someone with a toy. Trips to the playground usually ended with another child crying and his mother glaring at me and my evil/ill-mannered child. Any trip into public usually ended with me wondering why I couldn't control this small creature long enough to buy bread. Public trips always included me pretending to ignore the judgemental stares of other people, either because of his behavior or because of how he was dressed. Seasonal changes are just another routine change that I have no control over. The first two weeks after the weather changes meant I would have to literally sit on or lay on him and wrestle the new/offending clothes onto him every morning and every night. It was mentally and physically exhausting and some days I would just give up. He would win and wear his sandals and no coat in 45 degree weather and I would find myself not caring if he got sick. At least when he was sick he didn't tantrum as much, and he might even let me hold him and snuggle him a little. Bath time was a nightmare because he hated the sensation of water running down his body or head. There was absolutely no part of the day that didn't involve a fit of some kind. It was always a challenge to figure out what would calm him down when he got worked up, since nothing worked twice in a row. Will it be a snack, a movie, a toy, singing, a car ride with daddy, grandma reading a book, me totally losing it and spanking him so hard it left a mark? Add to all of this the stress of KNOWING that you aren't even close to providing him everything a 'good' parent would. I couldn't play with him because he didn't play. He watched movies. Over and over and over again. If he did 'play', it was alone, and he made it clear that you were not invited to join in. I didn't want to broaden his diet because something new on his plate would make him hysterical (a pea!!! Dear God no, not a pea!!!!!), I didn't want to try to read to him because by the end of the day the last thing in the world I wanted was to be near him, playgroups for social interaction were beyond us. I couldn't even get a real break from him because, unfortunately, I was the only one who had a chance at calming him down. This child was a black hole. I could throw everything I had at him, my love, my time, my patience, and he just sucked it in, never to be seen again. No smile, no kisses, no 'I love you, mama', some days no reaction at all. This child made me see all my flaws, my failures, every time I looked at myself or at him.
What did I like about him? I can't think of a thing. "Of course you love him, he's your son" my mother says when I called her in tears. Do I? I wonder in the darkest corner of my mind. "That's not what she asked" I replied. "We sat in there for an hour and I couldn't come up with a thing. The closest I came was that he was a good looking kid, you know, when he wasn't in the middle of a tantrum, and that doesn't really make me feel real great."
At the end of this ordeal, we got our diagnosis of Autism. As we are leaving the office, the Doctor smiles at me through my tears "Don't worry Mama, what you need to remember is that he is the same child he was 15 minutes ago. This diagnosis doesn't change that. You are taking home the same child you came in here with."
Yes ma'am. That is exactly what I am afraid of.
G and I are armed for battle. We head off to our meeting with the social worker. We are prepared. We both have our copies of our 17 questionnaires and a mental list of things we want to mention. (I wont even get into how clear it is by the differences in you and your spouses questionnaires that he really does have NO clue what happens in his house all day while he is at work) We are past the idea of wanting to present ourselves in the best possible light, we want ALL the dirty laundry aired and in her official report. If 'they' don't know who this child really is, how are 'they' going to fix him, right? So, in we go, ready to mention this, and this, and most certainly THIS....we are prepared. Until the perky little girl asks the first question. Turns out, all parents find this meeting to be an emotionally draining experience. Going through every negative aspect of your child, your home life and your (in)ability to handle it is indeed hell and she thinks she has found a way to make it a little easier for all involved. She wants to start out on a positive note. "What do you LIKE about Monkey?" she asks, pen poised. We are totally at a loss. While we were preparing to bring up all the bad things, we hadn't exactly been singing Monkey's praises. Our sleep deprived, war torn, emotionally exhausted brains struggled to change tracks. Let's see: He doesn't smile, or laugh. The only emotions he can express are anger and frustration, which are expressed constantly throughout the day and night. There is no empathy. I once fell down the stairs in front of him and realized that the only reason that he stood there watching me cry in a heap on the floor was because his sippy cup was empty and I was the only one big enough to pour him some more milk. Holidays and family get togethers were a nightmare. Monkey didn't 'do' presents. Wrapped or completely unwrapped and out of the package, it was still new and foreign and would make him scream and hit and make Grandma feel bad. I can't count how many times we all sat uncomfortably in the living room attempting to make conversation while Monkey laid under the kitchen table or in the garage screaming for 30 minutes or more until he could calm down enough that you could distract him with a snack or a movie. How closely we had to keep track of where he was at all times in fear that he would get too close to his baby cousin and push her down the stairs or hit someone with a toy. Trips to the playground usually ended with another child crying and his mother glaring at me and my evil/ill-mannered child. Any trip into public usually ended with me wondering why I couldn't control this small creature long enough to buy bread. Public trips always included me pretending to ignore the judgemental stares of other people, either because of his behavior or because of how he was dressed. Seasonal changes are just another routine change that I have no control over. The first two weeks after the weather changes meant I would have to literally sit on or lay on him and wrestle the new/offending clothes onto him every morning and every night. It was mentally and physically exhausting and some days I would just give up. He would win and wear his sandals and no coat in 45 degree weather and I would find myself not caring if he got sick. At least when he was sick he didn't tantrum as much, and he might even let me hold him and snuggle him a little. Bath time was a nightmare because he hated the sensation of water running down his body or head. There was absolutely no part of the day that didn't involve a fit of some kind. It was always a challenge to figure out what would calm him down when he got worked up, since nothing worked twice in a row. Will it be a snack, a movie, a toy, singing, a car ride with daddy, grandma reading a book, me totally losing it and spanking him so hard it left a mark? Add to all of this the stress of KNOWING that you aren't even close to providing him everything a 'good' parent would. I couldn't play with him because he didn't play. He watched movies. Over and over and over again. If he did 'play', it was alone, and he made it clear that you were not invited to join in. I didn't want to broaden his diet because something new on his plate would make him hysterical (a pea!!! Dear God no, not a pea!!!!!), I didn't want to try to read to him because by the end of the day the last thing in the world I wanted was to be near him, playgroups for social interaction were beyond us. I couldn't even get a real break from him because, unfortunately, I was the only one who had a chance at calming him down. This child was a black hole. I could throw everything I had at him, my love, my time, my patience, and he just sucked it in, never to be seen again. No smile, no kisses, no 'I love you, mama', some days no reaction at all. This child made me see all my flaws, my failures, every time I looked at myself or at him.
What did I like about him? I can't think of a thing. "Of course you love him, he's your son" my mother says when I called her in tears. Do I? I wonder in the darkest corner of my mind. "That's not what she asked" I replied. "We sat in there for an hour and I couldn't come up with a thing. The closest I came was that he was a good looking kid, you know, when he wasn't in the middle of a tantrum, and that doesn't really make me feel real great."
At the end of this ordeal, we got our diagnosis of Autism. As we are leaving the office, the Doctor smiles at me through my tears "Don't worry Mama, what you need to remember is that he is the same child he was 15 minutes ago. This diagnosis doesn't change that. You are taking home the same child you came in here with."
Yes ma'am. That is exactly what I am afraid of.
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