May 6, 2015

"I don't want to play outside!"

Over the last 4 plus years one of the most frustrating and heartbreaking things for me as a parent of a child with PBD-ZSD has been our lack of ability to communicate with our son. On a daily basis we can see Ethan's frustration and our own at our inadequate understanding of one another.

However, this afternoon after we got home from school and he was successful going potty [this is his most consistent successful potty time for us] I thought perhaps Ethan would like to go outside and perhaps use his walker, play in the grass, let me take some cute pictures of him outside, etc. Ethan however had very different plans. I took him outside and refused to stand in his walker, so he sat on the concrete driveway for just a moment before he started crawling back into the garage towards the van. I thought that he was going to try to get in the van in order to "tell me" he wanted to go somewhere. No, instead he pulled up on the van, cruised around the side and front of the van until he reached the steps that take you back into the house, and then he got down and crawl/climbed up the stairs and through the door [that I had opened when I figured out what he was doing]. 

Ethan clearly didn't want to be outside. As soon as we came back in the house he crawled to the living room and began playing with his toys. He knew what he wanted and he didn't care that his Mommy wanted some pictures of him "playing" outside on a beautiful May day. For those brief moments I felt like I could hear him telling me so very clearly, "I don't want to play outside!" 

Since Ethan "babbles" a bit and makes sounds (happy, sad, mad, etc.) I have a small idea of what Ethan's voice sounds like, but I often wonder what it would be like if he could talk and/or communicate more clearly through the use of sign language or picture cards. We have to guess at so many things with Ethan and he can't always express himself -- it is very hard on a mom when her child can't tell her what is wrong or what he wants. Most parents experience this frustration for a short period of months or perhaps a year or two before their child's ability to communicate gradually increases, but for us, this frustration and communication barrier continues to linger, and likely will for Ethan's entire life. We continue to work on finding ways to increase his communication -- he has an amazing team of teachers and therapists who are working with him and small/tiny gains are being made but they are indeed incredibly slow and limited. Yet, we will celebrate each accomplishment, no matter how insignificant it may appear to the rest of the world. 

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