Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Tuesday, July 13, 2010

Mr. Stop Sign

One day we were shopping in town and we decided to go into a new flea market that had opened in one of the old buildings on Main Street. There was some interesting stuff in there, and we always checked out places like this, because thrift shops and flea markets suited our budgetary needs. At one stall there was a glass case with some kids' toys. In there was a used hand puppet ~ a clown. Butterfly was quite taken by it, so I bought it for her. At 50 cents it wasn't something I'd deny her. And some instinct was telling me that a hand puppet had possibilities.

On the way home I asked Butterfly what she was going to call her new toy. Almost immediately, she said, "Mr. Stop Sign." Ok, I have no idea where that came from, but whatever she liked. Mr. Stop Sign became an instant favourite. She was hardly ever apart from this little toy. Where we went, Mr. Stop Sign went, usually in Butterfly's arms. (But when I look through old pictures, I see it was necessary for most of us close to her to be photographed with the little guy.)

A couple of days after we brought him home, Butterfly and I, and Mr. Stop Sign, were sitting in the living room together, and I picked him up and put him on my hand. I gave him a high pitched little voice and ask Bud how she was doing. She answered, while looking at him, that she was ok. Next thing I knew, we were having a major conversation, with Butterfly telling the puppet everything that was going on in her head, and in her heart. Hmmmm.

So Mr. Stop Sign became a valued guest at all tea parties. He was even welcome at the dining table. Even when no one else was around, I overheard Butterfly confiding in him. She had a fantastic vocabulary for a kid her age, and she had no trouble expressing what she wanted, whether it was food, or consumer goods, or what she wanted to do now. But she could never express her feelings. That is, until Mr. Stop Sign came to us. When he was there, she would confide her innermost thoughts and feelings in a soft, little voice I had never heard before. And she'd sometimes do so even if I was right there. I just didn't interfere. It seemed best to be a mere observer, not a participant, except to provide his voice. But that was him. I was just there, kind of hangin' around, without a lot to say ~ at least, not in my own voice.

When Butterfly was learning more about numbers, letters, shapes and colours, Mr. Stop Sign assisted. When she wasn't feeling well, Mr. Stop Sign got to the heart of the matter and found out where it hurt. Then he comforted her. The only time Mr. Stop Sign couldn't help, was when Butterfly was lost in a particularly destructive reaction. Then her face and her eyes darkened over, and she clammed up. When this happened, I couldn't help thinking of Rosemary's Baby, wondering what I'd spawned. But it wasn't her, of course. She was a sweet, good kid when something didn't have hold of her brain. At those times, out came the things I used to monitor her reaction and keep her distracted. There would be no crafts, no learning, no anything useful for four days. Reading books (and usually not getting through them), scribbling, music, singing, and hammering on wood with a toy hammer ~ whatever she would do to keep her busy and out of trouble was what we aimed for. She was very oppositional, so the best way to get her to do what I wanted her to do, was to tell her not to do it. Even when she seemed safely distracted for awhile, if I turned my back for scarcely a minute, there'd be fresh scribbles on the wall ~ with indelible marker sometimes. Or something would disappear ~ often something important. Or something would get scratched, spilled, cut, torn or broken... like the time she picked up a handful of gravel and "scrubbed" the hood of her Nanna's car with it. (Those scratches never came off.) Or the time she got hold of scissors and cut a crocheted blanket Mom had made for me. Reactions were destructive ~ and exhausting.

We got through them with the easel and crayons (oft replaced), play dough, that toy hammer, and out came an old quilt that I used to put over the dining room table. That created a "cave" for Butterfly, where she could hide and ponder her broken thoughts. Mr. Stop Sign came back into the picture when the affects of the reaction were wearing off. She held him close and usually looked a little lost. But as the darkness faded from her face and eyes, the real Butterfly slowly emerged again. The sheets of scribbles were discarded, the quilt was put away, and a collective sigh of relief filled the house.

Mr. Stop Sign was part of the family for several years. Butterfly soon got too old to confide in him in front of me. But he still attended every occasion, went on all shopping trips and appointments, gave and got greeting cards, and gifts as well. I think that was the best 50 cents I ever spent in my whole life.

Pictures: Above, Butterfly with Mr. Stop Sign; below that, Bud's Nanna poses with the little guy.


  1. This is hard to read, so I can only imagine how hard it is to write. The difference between your Butterfly and my Goose is that Goose goes through reactions very rapidly. She may have a lingering affect from food, etc for a week, but she can run hot and cold from one minute to the next and you never know "who" you are going to get and when. But at least I have learned to read her body language and prepare (somewhat!!) for what is coming next.

    We used a homemade sock puppet named Loopity who had a very proper British accent and liked to eat toe-jam for breakfast. Mmmmm hmmmm! :)

  2. Yes, it's important to take in body language, isn't it? And with Bud, her eyes. You see in the picture of her with Mr. Stop Sign, she is just coming out of a reaction. Her face is serious and pale, her eyes dark. (She has blue/grey eyes.) A ways to go yet.

  3. Do her pupils dilate? I saw that you posted on the PANDAS facebook page about having her tested. I will message you about the testing we had done with Goose. There is no true diagnostic test for PANDAS (yet!) but there is a study underway at the University of Oklahoma right now that we took part in.

  4. Yes,when Bud is in reaction, her pupils are not only dilated, but unequal. It's how I tell just what I'm dealing with when she's being difficult. What I'd heard about was strep being related to this, so I was going to have her tested for strep. I'm not right up on PANDAS yet so I'll be watching for your message. :)

  5. Oops! I forgot I was going to send you that. Let me dig through some info. Also, check out ACN forums - they have a great PANDAS board where you can post questions/discussions. There is an asperger's section too- you may already be familiar with that one.

  6. Yeah, I read up on Asperger's some time ago.. might be something new though. And Manda sent some info on PANDAS via fb. I'm going to look into it and see what I can do about it here. Thanks! :)

  7. I love that you shared the story of Mr. Stop Sign. Such a wonderful way to learn about your Butterfly. For me, just getting the right words out is difficult for my son and whether he speaks to inanimate objects or people he still struggles. It sounds like that puppet was the ultimate facilitator of conversation between you. I envy that and admire it at the same time.

    The darkness is something we all face with the disability. I know it well. And yes, I agree - best 50 cents you ever spent.

  8. Thanks. And yes, we're all of us looking for a light to face that darkness. I hope your son finds his voice, in some way, eventually. As I wrote in the blog post, "She's a Writer!" you just never know. Keepin' a good thought. :)

  9. Thank you for sharing Mr Stop Sign. We had a similar effect with our guinea pigs who provided a way for our son to communicate with us rather than talking to us directly. The guinea pigs also provided a way of destressing him as he came out of a meltdown.

  10. Yes, sometimes a sort of "go between" can work wonders for keeping those lines of communication open. :)