Thursday, June 19, 2008

Well, Hello Sweetheart

Today we introduced Monster, Monster, Please Come Out! to Annie. This is one of our favorite RDI Games and we play it sooner or later with most kids. I have been working with Annie for over a year but I kind of felt like I met her for the first time today as we played this game. She loved this game from the first moment! While we played, she looked at me again and again to share her excitement. Particularly when her mom was playing the Monster, she would reach out and hold my hand, lean toward me, look back and forth between the Monster Den and my face, apparently checking to see if I too was excited, a little scared, gleeful like she was. She was so overflowing with delight and anticipation that she had to share. Annie spontaneously took a turn being the Monster after she saw it done twice. This was amazing. She immediately understood her role as she and I called the monster from the den. She saw and wanted to take the other role too of being the monster in the den. The motor planning aspects of both roles made the game hard for her to carry out. She mouthed or whispered the chant, Monster, Monster, Please Come Out! but could not say it out loud. When she pretended to be a monster bursting out of the den, she was a little uncertain about who to chase or what to do. The difficulty did not stop her from enjoying the game, though.

Over the years, I have known a number of children who, like Annie, have very low muscle tone and slump against mom, a wall or me as they sit on the floor. Every activity is hampered by this underlying weakness and compounded by motor planning difficulty. Annie is typical of this group of children who seem to have a muscle weakness/motor planning disorder as a core feature of their autism. Annie does not show facial expressions except when she is feeling intensely. She has to be very excited or pleased (or anxious) to smile, very mad to look angry, very sad to look sad. She has no apparent nuanced or dynamic facial expressions. Her vocal intonation for speech is monotone although she can sing and loves to sing. She often whispers when she intentionally tells me something. When I first met her, she needed to actually turn around and touch a chair in order to sit on it--otherwise she literally fell on the floor missing the chair's seat. Her gait is awkward and she often bumps into things and falls. She giggles as she does things that are forbidden but she does not sound mischievous, she sounds anxious. Forbidden things are opening and shutting doors, turning on and off fans, turning on and off faucets, switching on and off lights. Annie, like every other child I have known with this kind of autism, seems compelled to repeat cause/effect behaviors. She is also prone to repeating behavior when there is a predictable and intense social reaction. If mom says sharply Don't hit the glass Annie! and Annie is put in a timeout chair for doing so, Annie will hit the glass again and again--even though she cries every time she is scolded and "punished". These naughty behaviors become a cause/effect loop and she cannot find her way out of these without help any more than she can resist turning on a faucet. Beyond these compulsive cause/effect behavioral routines, Annie often seems to need to go back to the start of any activity and start over to make the routine go exactly as expected. If she trips coming into a room, she goes back to the door and comes in again. If one block falls off a stack, she knocks them all down and builds the stack again--sometimes a dozen times before she either gets the stack to the height she wants or gives up and lurches away almost as though she is forcing herself away from the activity. On her own, this is the kind of activity that Annie will choose and this kind of activity does not seem like fun to me. But even the games that I teach her ,often end up feeling like a compulsive loop that Annie "must" do and not the kind of fun that play should be.

Annie has had hundreds of hours of drill work (not with me as I don't typically use drills to teach language) and she raced through the skill sets of matching, labellings, wh-questions and so on but she still usually needs just the right prompts to reenact these behaviors outside of therapy. Prompted, she will say or do what she has been taught but there is no sense of intention in the behavior when she does it. Annie says Goodbye Tahirih, when mom tells her to say it but I doubt that she would say this spontaneously even if mom prompted her daily for years on end. I get down and take Annie's hands and smile and say, Goodbye Annie! We had fun today. Come back next week! Annie's hands are limp in mine and she looks past my ear.

And yet... sometimes I have seen a few glimmerings of a purposeful Annie before today. I have also heard reports that Annie can say amazingly mature things when she feels something strongly enough. Don't talk about autism she once scolded dad after he got off the phone from a conversation about autism. This might be dangerous, she said after climbing up high on a play structure, which, with her poor balance skills, it was. Good-morning Kitty! Nice to see you! she said with pleasure once after spotting a kitty in a neighbor's window.

Do you want to be done? I will ask sometimes when Annie flops back on the floor in the middle of a game. I don't know if her behavior is communicating lack of interest or not. You want to do more, Annie will whisper, reversing her pronouns but telling me not to put the toys away yet. Let's play more then! I say happily as I get this tiny indication that she wants to continue our game. Having heard the stories and seen the little indicators that Annie has some real thoughts, I have been waiting.

I believe that Annie raced through therapy drills because the matching skills and language skills were not Annie's real communication hurdle. Her difficulty was and is with self-generated, intentional communication. Her difficulty is with self-generated, intentional behavior of any kind. Most the time Annie is caught up in a series of environmentally cued behavioral loops and the therapy drills just become other loops for Annie. My games, intended to elicit social interest and social motivation don't work as well as I wish for Annie either. Often, I think she was just doing what I tell or show her because the game is a predictable pattern and she gets caught in my loop weather she likes it or not. Annie does not feel like she is playing with me at all. Annie needs intense emotions in order to help her overcome a kind of profound intentional inertia that plagues her. Usually, it is hard to interpret what Annie really wants, thinks, feels and I have to watch for any weak behavioral indication...... but not today. Today, the Monster, Monster Game provided just the right amount of emotional energy and Annie was as easy to read as any other child playing a joyful game. The feeling of delight animated Annie and suddenly, there she was. The real Annie. Hello Sweetheart, my heart sang.

Note: Kid Stories are often composite stories and are based upon many and not just one child.

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