By Cathy Jameson
Every few months, I’m asked to fill out some sort of questionnaire for Ronan. Each form has several categories. Each category asks multiple questions. Each question builds upon the previous question. To be scored as accurately as possible, I know that I need to answer every question as honestlyas I can. Scoring is important as it can determine an updated treatment plan or therapy goal. Even so, long before I’m given them, I dread filling out those forms. It takes a lot of energy for me to start answering them. It takes even more for me to return them. I should be happy to finally be done with the task and give the sheets back to whomever has asked me to fill them out--a doctor, an educator, a therapist--but I find that it takes me days to return them. The dread of getting the results or standardized score can be just as unnerving as was answering each question.
At this point with how many assessments I’ve filled out, I should be used to this process.
But I’m not.
That’s because some answers are hard to swallow.
Does your child…
-toilet on his own
-make his own meals
-know how to budget for a shopping trip
As with many assessments, questions and sections become more complex. On the first few pages, I can usually check off that Ronan can Always or can Usually perform whatever it is that’s asked:
My child will…
-turn his head toward me when his name is called
-follow 1- and 2-step directions
-understand a routine with and without picture cues
But when the assessment items become more complex, I begin to cringe.
My child can…
-write a school report with proper punctuation and grammar
-communicate personal goals for himself
-navigate (i.e., ride a bicycle or moped, drive a car) into town to run an errand on his own
If I’m filling out any of these forms in the waiting room, I turn so that no one can see how quickly my emotions change when I get toward those prompts and for these as well:
Can your child…
-walk one city block by himself
-use public transportation without assistance
-call friends on the phone to make future plans with them
When I know that I will be choosing No, Hardly Ever or Neveranswers, like for those above, I end up staring blankly at the page in front of me.
The last few pages could be done rather quickly since Ronan cannot do what’s being described, but I freeze when I read them. I’m grateful for the positive answering I’ve been able to do - Look at Ronan go, go, go! But those more comprehensive skills at the end may never be achieved. Seeing them remind me just how intense his autism reality is - He can’t, won’t, and could never! That intensity hasn’t lessened, even with the improvements he’s been able to make, and those assessments continue to remind me of that.
I almost froze again last week when I reviewed an assessment that I filled out a few months ago. I filled it out in the beginning of 2019 and had forgotten all about it. Before I got down in the dumps looking at what Ronan had still yet to accomplish, I decided to change my outlook mid-way through reviewing it and especially before I got to the last section. While the requested replies were still No, Hardly Ever or Never for activities I knew that Ronan couldn’t do, I replied with Not Yet.
Not Yet can my son use the toilet on his own, but he’s getting there. If I had to put a number on it, I’d say he was about 75% toilet trained!
Not Yet can he make his own meals, but he sure does tell us when he’s hungry. He does that with sign language and by getting out not one bowl on the counter, but 7 bowls!
Not Yet can Ronan budget for a shopping trip, but he knows that he needs money to make purchases. He can’t count the money, but we put some in his wallet and prompt him to take out on his own, which he does!
Baby steps have brought Ronan a tiny bit closer to those successes. Lots more work will be needed to get Ronan closer to success and toward independence:
Not Yet can my child walk one city block by himself, but he still lets me hold his hand when we go for walks in our neighborhood!
Not Yet can Ronan use public transportation without assistance, but he’s able to sit without any meltdowns in the car wherever we go!
Not Yet does Ronan call friends on the phone to make plans with them, but he sure does love video calling Daddy when he’s on a work trip!
I’m going to stick with the Not Yet answers for now. That may not be officially acceptable by the agencies or entities asking for information, but it’s a perfect response for our situation. It gives Ronan, and me, room for improvement. Not yet is my child doing whatever is age appropriate. Not yet is my son on grade level for some school subjects. Not yet have we controlled the seizures with certain treatment suggestions. But by golly, he’s still trying. And I’m still trying, too! With every task he’s asked, with every obstacle he overcomes, with every effort he makes, Ronan’s trying. He’s trying to catch up, to maintain, and to do his best. I don’t care what the forms say. I don’t need to waste time worrying where he falls on a scale. I know he’s delayed. I know his skills are limited. I know he needs help. He’s getting help. He’s getting loads of support from people who love him and want to care for him. Because of that, Ronan is learning. He is growing. He is happy. And he is moving in a forward direction at his pace. As long as he keeps moving forward, I’m happy.
Cathy Jameson is a Contributing Editor for Age of Autism.