The Transition Begins

Wil was born two months early. During his month in NICU we received his diagnosis and found out heart surgery was impending. We were also introduced to the concept of early intervention for special needs children. This service is offered by the state to children who are or will be "delayed." It includes physical therapy, occupational therapy, speech therapy and in some cases, as in our state, a weekly visit with an early interventionist. The first three years of therapy are received in home or clinic and then the child "transitions" to the school system where he is supposed to receive his services through the district. Wil began receiving therapy when he was six weeks old - two weeks after leaving NICU - after a little bit of pushing on our end. (they didn't want him to start until he was six weeks beyond his adjusted age, i.e. due date, but we insisted that because he was here and not actually negative 4 weeks old he should be seen asap.) He has been receiving therapy ever since with only two significant breaks; the first break was at five months old for his heart surgery and the second was one year ago when we moved from the Sunshine State to the Palmetto State. (This is M, Wil's OT. Wil loves working with him)

We have become very comfortable with Wil's therapy routine, his progress and abilities, and his obvious delays. When I look at Wil I see him in the context of our family which includes a little brother who is the same size and interested in many of the same things. Our context also includes our church family where Wil stays in the nursery since he is not yet walking. So in my eyes he just fits in. Now, I am aware that he is 12 to 18 months older than most of these kids but I just don't think about it often. He is who he is and I have always been okay with that.

However, today, reality kicked me in the knee's. Wil had his third of six transition meetings/evaluations. This morning we saw the psychiatrist. Wil was placed in the designated pre-school chair (after failing to follow instructions and climb in it himself) and sat attentively at the table before the evaluator. I sat in the corner behind him. The evaluation involved giving Wil one task after another to see how well he did. With each passing test the lump in my throat grew larger and the burning in my nostrils intensified. Anyone could see that he was not doing well but it was really emphasized by the phsychiatrists repeated comment of "oh he is just sooo cute," as if that was going to put a huge grin on my face and cause me to brush off what was becoming painfully clear. Wil is really delayed. After Wil's test I was asked many questions about his abilities at home. Most of my answers went something like this, "ummm, no he's not really doing much of that" or "well, occasionally he does x, y, or z but not consistently."

During this hour long session some of the grief that occasionally sneaks in was banging on my heart. I couldn't ignore it or busy myself with something else or pretend that Wil was exactly where he needs to be. I couldn't escape the 7 x 7 room where I was watching him do all the wrong things on every single test that was put before him. I also couldn't escape Wil's enthusiasm. Even though he put the circle in the square he clapped and yelled "aayyyyy" after he did it. Even though he couldn't pull the red block through the opening in the glass box he applauded himself for lifting the box up to retrieve the prize. Even though he couldn't put the peg in the hole he cheered when he got close. I couldn't escape the fact that Wil tries hard and he delights in the process. I couldn't escape the fact that as hard as our reality occasionally feels Wil continues to teach me simple yet profound lessons about what is most important and valuable in this short life we have been given. It is something I need to be reminded of often.

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