Sometimes, I envision my daughter as an unruly body of water. If left alone, her banks would run over and she would spill on to the world, dysfunctional and lost.
It’s a gross exaggeration but it does sometimes feel like this.
At times, I truly feel like the only thing standing between her and complete disaster; the only one who holds her together and helps keep the waters from spilling too far, or running too far over. There are times that I fail, but sometimes this is because her waters are just too rough and choppy. And sometimes I fail because it is just impossible to contain the essence of who she is.
But who is she - really?
Is she the girl who will never have a girl friend? Will she simply grow up as a person who strongly prefers to be away from everyone else? Is she a child who will never handle certain noises or certain songs?
Or is she a girl that, through therapy, will learn to make friends? Will learn to tolerate working in groups? Who can learn to cope with certain noises or songs?
Does therapy help her or does it violate the core of who she just IS?
Is my push for therapy for her based on my desire to “normalize” her, or is it a true attempt to give her every possible tool to succeed as much as she can?
And what IS the definition of success for her?
The worst thing is, I don’t know these answers and neither does anyone else.
Chelsea recently joined girl scouts, not because she wanted to but because I wanted her to. And I didn’t want her to because I actually cared about girl scouts; I wanted her to have social opportunities outside of school and help her make friends. Because it was necessary, I became one of her leaders.
Monday night we had a ceremony for the girl scouts to begin their year. Chelsea stayed with all of the other girls and sang her song and put a petal on a board. And each girl’s name was called. One by one, the girls walked to their one leader to receive a pin, walked under a decorated arch where I shook their hands and they returned to their seats.
After each girl received a pin, a small round of applause erupted. Internally I winced, but I saw Chelsea out of the corner of my eye and she seemed okay. I breathed a sigh of relief.
Until her name was called.
She broke out into tears. They were tears I recognized and my heart instantly fell. In front of everyone, she was sobbing, shouting aloud, “I have to use the potty! I have to use the potty!”
It was not true. She didn’t have to use the bathroom. She was just overwhelmed by the constant clapping.
I asked her, “Do you want Mommy to help?”
Of course she said no, but she always says no when she is in a state like this. So I walked to her seat and took her hand to walk her toward her co-leader to receive her pin. She was still crying, still saying that she had to “go to the potty!” and switching that with “I can’t!”
The leader began to pin her vest and spoke to her. “Chelsea, you’ve done a great job and you can get your pin because you know your Girl Scout promise!”
“I DON’T!” she screamed, though it wasn’t true.
She got her pin and was supposed to walk through the arch. Grabbing her hand, I walked toward it while she locked her feet. I was dragging her.
I was dragging her.
When I realized that there was no way to save this for her, I let her go and Jon took her out of the room. She didn’t return for the rest of the ceremony. I shook hands with every other girl except my own. Only she had not walked through the arch. Only she had burst into tears in that way.
No one in the troop knows she is autistic and this is a source of controversy in some ways. I don’t want Chelsea to be unfairly judged but I also know that she doesn’t interact the way the other girls do.
Am I dragging her? Or am I helping her?
Today I grieve for the experiences that she and I will never have; for the opportunities that I will miss as her mother, and for the pain she feels from anxiety that she cannot control and that I pray does not destroy her.
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