Posted this over at my blog for Serafina, Angel with Autism today, but also wanted to share here.
I love the story of Pandora’s box. Pandora is told never to open the box that she receives as a wedding gift, but when curiosity gets the best of her and she can’t take it anymore, she decides to take a peek. When she does, she unleashes all evil out into the world and upon seeing what wrong she has done, quickly shuts the lid again. While Pandora is grieving, from inside the box she hears the whisper of a voice wanting to be let out. She trusts her intuition about opening the box again and out flies hope.
I like this story for three reasons. One, if Pandora had not taken a chance and opened the box again – even though bad things had already befallen her – hope would never have been born into our world; Two, Pandora is a woman just like me, who cannot contain her curiosity; And three, there is always hope.
I think of Serafina and the fact that she cannot speak. Of course my wish for her is that she will be able to speak one day, her frustrations will be lessened, and our communication barrier will be broken. But if it is not the case that she will ever be able to verbally communicate, I still hold out hope that one day she will be able to communicate to us using technology of some kind.
Last night I started reading a book called, “I Am In Here,” about a non-verbal autistic girl who learned to type and write her own poetry. Autumn pointed out the book to me last week in the store and I had to buy it. As soon as I opened it up the poems inspired me and made my eyes well up with tears.
I wanted to share a few of my favorite poems from the book.
Elizabeth M. Bonker writes:
I sometimes fear
That people cannot understand
That I hear.
And I know
That they don’t believe I go
To every extreme
To try to express
My need to talk.
If only they could walk
In my shoes
They would share my news:
I am in here.
And trying to speak ever day
In some kind of way.
Live and Let Live
Am I on display?
Why do they look at me that way?
I want to say
I am okay.
Sometimes I do things you may wonder about.
Just let me be and don’t try to figure it out.
I get so angry and upset
Because my expectations are not met.
I can’t think of a better way
To make you see what I want to say.
I am always sorry later, trust me when I say,
I would rather have a nice day.
If we all try to get along the world would be a happy place.
Everyone could have their space.
War could disappear without a trace.
That is my wish.
I know that “Me” poem is true for Serafina. She is talking all the time, in her own language. She is very verbal and has always been communicating to us verbally, we just can’t understand what she is saying. The autism worker who comes to our home says that Serafina has great intonation and a melodious, sing-song quality to her voice.
Serafina communicates in other ways too, for instance, by taking our hand and leading us to what she wants. When she was younger, she used to just push a chair up to the counter and climb up into the cupboards to get what she wanted herself, until we locked them all up. Now our whole house is under lock down because of our clever and curious little monkey.
We have always treated Serafina as if she understands what we are saying. We talk to her the same as we talk to Autumn and Kesa, or anybody else. I have never believed in treating her as if she were different. I don’t really believe that is helpful to her, or to any other child or adult with special needs, and it really doesn’t feel right to me. She is a human being, just like me and you, and she has a soul and spirit too.
Lately, we have even been trying some different things with her, like the popular ABA therapy prompts, but we are not sure how we feel about treating her this way, repeating words to her until she says them back to us and withholding objects that she desires until she does try to talk seems cruel to me, especially because we most often do know what she wants because she is good at showing us and also because I am very intuitive with her and can read her most of the time. I know when she is tired, hungry of overstimulated. I am able to tell when she is just pissed off that I am on the computer or trying to do something and she wants my attention. She makes that quite clear! We also know that she knows that we know what she wants, so acting like we don’t and putting her through the difficulty and frustration of trying to get her to speak in a way that we understand, just seems very heartless and cruel, but sometimes I wonder if that truly is the only way to try and get her to talk because this ABA therapy is so widespread and recommended.
This leads me once again to question what it is that I believe to be right and true and to trust my intuition about what is best for Serafina. As you can imagine it is a very heavy weight upon my shoulders as I stay up late wondering what is the best course of action to give my little girl the best life that she can have. I don’t want to make a wrong decision and I don’t want to lose any valuable time that could help her to learn to speak.
I think that it boils down to a balance. Of course I want to do everything in my power to help Serafina communicate more effectively and to speak actual words. We will continue to talk to her as if she understands us and treat her as if she were a “normal” child.
She is in there and I am holding out hope that one day she will be able to let us know exactly what is in her heart and on her mind and that she too, will have a beautiful and inspiring message to share in her own words with the world.
Until then, I will be her voice and share her story and the love and life she exudes through her beautiful angelic spirit. ❤