My daughter goes to autism school.  It has been a godsend for our family.  She gets the kind of help there that she needs.  Her therapists love her even though I am sure she drives them crazy sometimes as she does me.  She is a ball of energy with a mind of her own and she is very creative and persistent in finding a way to get what she wants. She has the capacity to wear out multiple adults in a day and some days it seems to be her life’s ambition. That being said, we love her dearly and we celebrate every achievement, even the ones that make our lives more challenging.

As part of her enrollment, she goes through regular evaluations. The school needs to do this in order to ensure funding.  They have to prove that the kids are making progress as a result of their efforts. I understand all of that but evaluations can be a painful reminder for the parent of a non typical child.  It forces you to compare your child to a statistically average child and it reminds you of the differences between your 12 year old and a more typical 12 year old in a “normal” school situation.  I struggle with the word “normal” on a daily basis. To me, there really is no such thing, but society forces us to compare ourselves to each other and our children are compared to each other constantly.  Schools have to keep track of statistics because they have to prove themselves worthy of their funding.  Standardized tests plug our children into graphs and charts and weigh them against all the other children who take the same tests.

The evaluations that I have to fill out cover many areas of a child’s life – Communication, Daily Living, Social Skills and Problem Behaviors.  I am to circle twos, ones or zeros which represent the frequency with which my daughter demonstrates certain behaviors – often, sometimes or never.  Seems easy enough until you enter in the protective/defensive nature of a parent.  You don’t get to add an explanation or a “but” to your answers and I am sometimes unsure of exactly what is meant by the question.  And some of the questions are very specific reminders of what my child cannot do. Sometimes I have to guess because the question wants to know if she understands something. She is non-verbal.  She understands a lot but I am not sure if she understands the meanings of street signs or that money is used to buy things.  I like to give her the benefit of the doubt but I don’t know exactly what she knows or doesn’t know unless she chooses to SHOW me.

The talking section of the evaluation is the worst.  Believe it or not, I don’t think about the fact that she doesn’t verbally communicate a lot of the time.  She communicates quite a bit for someone who doesn’t talk.  She taps you on the shoulder to get your attention, she points, she brings you things that she needs help with, she says something that sounds enough like “bath” that I have no trouble recognizing. She also “talks” with her iPad.  She is a whiz on that thing.  She is so fast, I have great difficulty going back into the program to find the “words” she just “said” but if I ask her to repeat herself, she can find it again in a heartbeat. I have to circle so many zeros in the talking section. “Says “Dada” or “Mama” or another name for parent.” – zero. “Says the names of at least three objects. Example: A ball.” – zero.  “Says one-word requests. Examples: “Want.” “More.” “Open.”.” – zero.  It’s enough to make me want to curl up in the fetal position for the day.  She knows hundreds of words on her iPad. She knows who her parents are. She is learning to read. She is funny and she knows it.  I refuse to focus on what she cannot do.  I couldn’t make it through life that way.  I wish these evaluations showed how fabulous she really is.

The other section that is troubling is called Problem Behaviors.  Although, my daughter doesn’t actually look too bad on paper in this section, I have to admit that she is sometimes physically aggressive (better than it used to be), sometimes she exhibits self harm behaviors (mostly biting herself), she eats things that aren’t food, and she is taking puberty quite seriously (we’ll leave it at that.). All reminders that we have more work to do. I am fine with work but I find it is better to focus on a few issues at a time.  Trying to inundate her with rules and directions just frustrates everyone.  We are all works in progress. She deserves more than constant reminders that she should be different than she is.  She needs to be appreciated the way she is now.

I’m done circling numbers for now. Time to go back to living in the moment, taking the baby steps, and focussing on how far we have come.  I am so grateful for all those who care and do right by her.  Everyone else is missing out.