Autism debate

A few weeks ago, I dipped my toe into rougher waters in the world of autism. I attended a parent advisory meeting at Jackson’s school. The discussion had turned to providing more training for parents, equipping them to reinforce their children’s training at home using the same methods employed in school. One mom’s response revealed a new side of the autism debate of which I had been blissfully unaware.

She ademantely declared she didn’t need more intensive parent trainings because she wanted her daughter to feel comfortable being herself at home. She wasn’t interested in employing school training at home because she wanted her daughter to feel like home was a sanctuary, not a work place. She was convinced that rigorous schedules and training at home would somehow convey to her daughter that she was unacceptable and unloved unless she preformed. While I agree with her take on home being a sanctuary and place of acceptance, I couldn’t help shifting in my seat at the thought of my son and our home without schedules, without constant intervention tactics, without intensive home support of school training. Sanctuary would certainly fly out the window, and not just for Jackson.

Stop the expectations at home? Don’t provide behavioral support? Stop teaching my child? Seems the opposite of love to me, especially for our children who need consistency. Since vicariously picking up social cues and desiring to imitate and please parents and peers are not functioning in Jackson, schedules, pictures, and consistent expectations, along with lots of praise, hugs, and cheering are key to his learning. Without these…I shutter to remember life two years ago when we started to lose Jackson: glassy-eyed gazing out the window, cut off from us, and our helpless attempts to draw him back into our lives, our own sense of lostness. I am so thankful for the strategies we’ve learned, and I must use them at home. They are not just producing results, they ARE the WAY he learns. He is thriving and relieved to finally make a few choices on his own, to know a few words to request essentials like “water” and fun interaction like “tickles.” We use these strategies because they work for Jackson, and because I love him too much not to do all that I can to give him the tools to be all that he can be and to be as connected to our family as he can be.

The more I read from parents in the autism community, the more I am torn apart by the divisions I see. Even our blog subtitle is apparently controversial: fighting autism at home. Some would argue we shouldn’t fight autism as though it’s some abnormality that needs to be gotten rid of, we should accept it as who our son is, who God has destined him to be. Sorry, that seems a little fatalistic, and I just don’t buy it. What 4 year old is all that God has designed him to be? I wouldn’t follow that line of thinking for any of my other children, why would I treat Jackson differently? My job is to help him discover who he is, what his potentials are, his hopes and dreams, talents and loves, his calling and purpose. It’s my job to teach and empower him to go after them. Not to be some version of “normal” but to be all HE is able to be. How can I do this if I stop working to learn who his is, or stop letting him experience all that he can, learn all that he can, or build relationships with the people in his life?

It’s not a question of love and acceptance. I think we’d all agree, acceptance isn’t some pass for not parenting. Of course I love and accept Jackson, just like our other three children. Autism is not who Jackson is. Autism is just along for the ride, it makes learning different and Jackson’s thinking different. So the goal of our teaching is not to change the way he thinks, but to find the best ways that work for Jackson to be equipped to be all he’s meant to be and to build relationships. We were designed for relationship, if he doesn’t learn how to relate in his own way, what’s the point of existence?

If Jackson never speaks another word or learns another skill, I will love him just the same. That is my primary goal: to teach him that he is incredibly loved, and so valuable, we will never give up on him. But I’ll be a failure as a parent if I ever stop trying to teach him the rest. Because all children CAN learn. Jackson’s no exception. I love him too much to not help him discover just how much he’s capable of accomplishing. Thanks to Bob the Builder, we have a new theme song at our house, “Can Jackson do it? YES, HE CAN!”