Sunday, June 8, 2014

More than words can say...

My little girl will be 9 in the fall. Her curly hair and beautiful smile is as gorgeous and sweet as the day she was born. Her boundless energy is as exhausting as it is inspiring.

She has grown so much and I am proud of everything she has overcome as a nonverbal child with autism. Her expressions and volume of howling, screaming, vocal stims, and other random noises tell a story, but I will always wonder, "what if she could tell me?"

She makes everyday bright in her own special way. She has never said, "I love you" or "I need you mommy," but she shows me in her own way. When she squeezes my arm and buries her face in it, I know this is her way of showing me love (and also a nice sensory fix for her). She will grab my hand and pull me to the couch or her bed just to sit by her. My heart soars in these moments. This is a way that SHE is initiating and engaging with me. Those of you with children with autism can appreciate the moments when our children reach out to us instead of us always having to pull them out of their autism into our world. When I ask for a kiss she leans in enough to just give me the top of her head. I will say, "lips please." Most of the time she will tilt her head up so I can give her a kiss on the lips or cheek, which I know is not her preference. These moments are precious and I cherish each and every one of them.

She has so much to tell us. More than even words can say.  Thank you Dynavox for giving my angel a voice, even if sometimes she is just flat out talking back. I love that she can say, "no" and "please." That she can ask for what she wants instead of me giving her choices that may not even be close to what she really wants. I am grateful her big sister is able to manipulate the buttons on her device so she can participate with her communication success. Of course, on her birthday she made a button that said, "It is my birthday. Have a sucker or I will punch you in the face." Sister humor! We deleted it, but it was funny. I love that when I say, "go and get your words" she knows exactly what to do. I appreciate her persistence with hitting the same button/request over and over again even after I have already said, "no." See example here- https://www.facebook.com/photo.php?v=504593996313711&l=7394803661349044850.

For years she used PECS to communicate and those pictures were one of the greatest tools we have used to open up her world. With her Dynavox she has so many more options. We are just beginning to unlock all of the ways we can use it. I think I am the most grateful for the decrease in frustration. She used to get so mad and sometimes even cry when we didn't understand. Now she just gets mad when we say she cannot have candy for breakfast!

So for those of you who have children that can say, " I love you" or "help me" or have any sort of conversation at all- count your blessings. The struggles related to our communication barrier isn't about us as parents, it is about how hard it is for her to express herself and join in with others. Autism is already full of challenges, being non verbal complicates things on a whole different level.


3 comments:

  1. great blog, this really choked me up.

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  2. It is wonderful that the communication doors are opening for her and your family!! :) We have tried multiple times over the last 4 years to acquire a communication device for our child. Unfortunately our insurance will not accept it as medically necessary. If they only knew how necessary it truly is.

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    1. Do you have any waiver or grant money through your county? Our insurance paid for hers, but I know others have had funds through their state or county.

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