Assessment Whirwind

We had four straight days of assessments for Abbie this week, and not a second to catch our breath. It was a stressful time for all of us, especially Abbie, who is very aware of when she is being “tested” and wants badly to succeed. This week reconfirmed that my life verse is becoming, “None of these things shall move me.”

We started out with the school PT visiting us on Tuesday, while the school OT, special services coordinator and our home school principal came to the house on Wednesday. Thursday took us to the hospital for a swallow test, and PT/OT. We returned home to immediately meet with two teachers. Friday we had Abbie’s program at the University, which the school speech therapist observed.

It was exhausting to educate, educate, educate and answer questions all week. But, Thursday afternoon brought a conversation that I will long remember. One of the teachers saw Abbie, truly saw her. She took many words out of my weary mouth as she turned to the other teacher and said,
“Abbie is not like any of the other kids we have ever worked with. She is not mentally retarded, she is just motor-challenged. Her desire to eavesdrop on conversation, her ability to respond to conversations both directed to her and those about her indicate a very high cognitive level. We must take care how we talk about her and around her.” I was already stunned, but then she continued, “We have got to give her time to respond, without interrupting with additional prompting or encouragement. So often we dismiss kids’ potential when all they need is additional time.” Yes, yes yes!!

After I had described Abbie’s two switch communication system, the teacher brought up Stephen Hawking — a man whose brilliance is only shared because of a communication system. She likened Abbie to him in that they are both intact minds trapped in bodies that do not allow free expression. I could not believe what I was hearing! She asked me if I’d ever been accused of reading more into Abbie’s actions or abilities than was truly there. I responded that I try to be very cautious about that, always wanting to get validation from a therapist or other observer. She told me that I shouldn’t worry about that because I was able to give several concrete examples for every capability of Abbie’s that I described. That was encouraging to hear.

I smiled while closing the door behind them. For the first time in three years, someone SAW Abbie, without me being the stage mother, describing her in detail. What a victory for her!!

The swallow test on Thursday was a little less victorious. It turned out about as I’d suspected. Abbie wants to swallow, responds quickly when something is placed in her mouth, and tries valiantly…but, her body is not quite working for her yet. Her tongue goes up and down very well, but we need more back and forth motion. Her challenge right now is moving food from the front of her mouth to the back, so her swallow is delayed. By the time she can swallow, much saliva has seeped down the back of her throat and into her trachea. As I told Abbie, she just needs a little more swallowing practice. Her speech therapists told me not to be too discouraged by the results, and that overall she is doing very well. They thought “needs more practice” was a good summation. Please just pray for “forward and back, forward and back” movement.

I have had much fun with Abbie this week, who is in a truly great mood most of the time. She has relished her new game of “kick ball”, where while sitting in her chair she asks for the ball with her switch and then kicks it away with her feet. We’ve gotten more than our quota of smiles and dimples, and overall life is very good.

But…I do pray that none of these things shall move me…negative test results shall not move me to despair, positive test results shall not move me to complacency; defeat shall not move me to concession, victory shall not move me to self-reliance.

Have a blessed week!