The school year is beginning.Transition intensifies the challenges with our special needs child.
My son, like many with Asperger’s Syndrome, has sensory integration dysfunction.This, combined with an inability to read other’s body language or notice subtle changes in voice tone, leads to him getting carried away even in simple games like tag.Often the result can be at best embarrassing, or worse, disruptive and invasive.In order to prepare for school we review the guidelines at school.This includes the “No Touch” rule for play with classmates.
My husband and I have 6 children, so I take advantage of a car ride alone with Daniel to talk in peace and quiet.
“So school is starting again.Are you excited?”
“Well, let’s remember some of the guidelines from last year.Remember the “No Touch” rule?That will be in effect again this year.”
“But, Mom!Why!?!”Daniel is starting to get upset.
“Daniel, we have discussed how you can get so excited by the game that you get carried away.”
“But I don’t want to!”His voice takes on his frustrated tension and I can tell he is working up to an episode of frustrated outbursts!
“Daniel!This is the same rule you had last year and had a lot of fun.Remember how you and Mrs. Tubbesing [his aide] figured out a list of games for you to play without needing to have hands on contact.You were fine.”
My happy and enthusiastic son suddenly hangs his head and sighs, “But I was secretly sad!”
My heart aches for him momentarily.This is where it is hardest for me to be his mom.
Daniel appears, at first glance, to be a normal 10 year old.It is expected that he will live an independent, normal life.While his high functioning, and its air of normalcy allows me to expect all the milestones that a mother hopes for their child, it sometimes prevents understanding of Daniel’s difficulty relating to the outside world.
As his mother, I am always balancing this fine line.When I advocate for him with teachers, school administrators and staff, I attempt to evoke compassion for him, describing a really amazing kid who struggles with a world he often cannot fathom and that often misunderstands him.
My interaction with Daniel must take a different position.I can not feel sorry for him.Over empathy would only prompt treatment that would enable a victim mentality.I need him to better understand himself and the boundaries, tools and guidelines he will need to relate to the outside world and bridge the gap of Asperger’s Syndrome.When I speak to him, I cannot excuse his struggle or misbehavior, but rather present tools for Daniel to become his own advocate.
Smiling, I reach over to Daniel and tousle his hair.
“Well, you could be sad if you are telling yourself the story that you are missing out on something by not playing hands-on games like tag.But let’s see what happens if we change the story.What if we turn the story around?What if we look and see that when you have a lot of things to concentrate on in school, then that takes a lot of your mental energy.When you play hands on games, it takes a lot of mental energy to keep from getting carried away.Do you think you have enough mental energy for both?”
“No.”Daniel replies shaking his head.He is still not sure he wants to change the story.
“And you don’t have a one-on-one coach to help you when you are at school.If you do get carried away, you can hurt a classmate without meaning to.Then you feel really sorry and frustrated and upset.Doing something like that in the past has made it harder for the other kids in class to see the really cool side of you.So actually, having a “Hands Off” rule gives you a boundary that frees up your mental energy to focus on learning and making friends.It prevents you from getting carried away in your play.When you stay in control in your playing, you can show your cool ideas and personality to the kids in your class and make friends easier.So really, the “Hands Off” rule is a great tool to help you make friends and learn!”
“Ok, ok!”Daniel is still not completely sold.He is wishing he didn’t need boundaries like that but he knows that his Asperger’s Syndrome, or Special Brain, as he calls it, is both a curse and a blessing.Since it isn’t something that can be removed, he will have to work with it.
I am always a little in awe of my son.I know adults that haven’t come to terms with their weaknesses and still set themselves up for disaster.At 10, Daniel is surprisingly self aware.
I take a deep breath trying to prepare for the heart ache and happiness of the year ahead.