We moms with autistic kids have to listen to some pretty uncomfortable feedback, fairly frequently, often repeatedly, from schools and community programs. I know that nobody intends to cause us grief. I know that the intention is to inform. However for the mom receiving it, each individual communication of some sort of bad news is not a discrete event, because it is one of a series of bad reports repeated again and again, year after year. It is like a persistent drip from the tap. A few drips don’t bother anybody. When it keeps happening, it becomes an issue. For me and I think I speak for all autism moms, as time goes on it becomes increasingly painful to listen to all those things that your kid does “wrong”, and may never do “right”. It erodes the spirit, and dulls hope.
Here are some examples of repeated feedback that I have had:
• N his using the back of his t-shirt to wipe his bum….we need an inventory of t-shirts……
• Had to go to the sensory room first thing in am three days this week, is everything OK at home?
• We had to put mittens on N’s hands today to protect the EAs from scratches
• Please cut N’s nails, he is gouging his EAs
• EAs are now wearing protective arm wear (“Protective arm wear” brings forth images of what I imagine to be the next step – armour, a full suit, Sir Lancelot)
• N is hitting other children during circle time
• N had to be removed from activity because he would not be quiet
• N wandered off today, if it happens again he will not be able to participate..
• Sorry, we cannot provide speech pathology support to N because he has no speech (doink!……isn’t that the point?)
• N is failing to meet the goals of the program….
• We put in a behaviour modification program to stop his behaviour
Not all feedback we have received is negative, in fairness. We have heard many times how much N is loved at school. However nobody has ever phoned me to tell me good news. Yesterday was a new experience: N’s new teacher called to tell me that N was doing WELL! He understands a new routine in a new school, is showing signs of both independence and social interest. Wow, WOW! Titanic has gone down but I AM rescued! There is LIGHT!
This year we switched him to a structured teaching classroom at a different school. There has been a great effort by the school to integrate him, and I appreciate that! But at some point, there needs to be an evaluation of who benefits, and what the benefits are, and at what cost. Still, any change causes worry, because we are never sure how N will react. There are no guideposts, only what feels like the right thing to do.
I am amazed that his teacher would care enough to call me with good news, to tell me that he is doing well! It tells me N’s teacher understands not only her students, but also the impact on families, who are full of love for their child but starved for hope and good news, any positives. This is what happens when your child is NOT put in a room with other typical children. This is what happens when they get the support that they (and their families) need.