Hi All,
Jenny here, a new blogger to The Arc. I’m looking forward to informing and communicating with the community to spread the word about equality for those with special needs, and how we can achieve it.
I’m most excited to get involved with The Arc because of the effect this advocacy has on a friend of mine, Jonah Lutz.
Jonah is autistic. He is nine years old now, and finishing up his summer at Kennedy Krieger’s Neurobehavioral Unit in Baltimore. He is enjoying mostly aggression-free days and toss-less nights. He’s hugging his sisters when they come visit, and I think he may even be keeping ketchup on his plate instead of all over his shirt. This summer, Jonah is experiencing some peace.
Had I written this post six months ago, this would not be so. I worked with Jonah during one of the toughest years of his life, when his autism became such a hindrance that it was affecting not only him and his family, but his aides and school as well.
Jonah was an extremely aggressive eight-year-old as I last remember him. He was self abusive and outwardly aggressive. One time, I was working with him and he became so aggressive toward himself and me that his father, seasoned in karate, had to use a hold on Jonah and count with him so he would calm down to a reasonable level.
Jonah’s parents were aggressive as well, but in a more constructive way. They were relentless about his education and therapy. Their hopes for his future were rarely dampened — until last summer.
Jonah was accepted into a prestigious school in Pennsylvania for children with Autism Spectrum Disorder, after rigorous efforts by his parents to get him a spot. When he was finally taken in, all hopes for his progression were restored.
Two weeks after he started at the school, I went over for my typical shift. But I found a somber cloud surrounding the house. Jonah had been expelled from school for his behavior.
His parents felt hopeless. Despite their efforts, Jonah remained out of school and ascended into dependency. They worried what would happen to him as they aged. What would they do? Where would he live? What could the state provide? They had few answers then, as I’m sure many people in the same situation have now.
As the months wore on, Jonah was put on a waiting list for Kennedy Krieger. The day when he would leave for rehabilitation was never close enough.
Eventually, one by one, his aides fell by the wayside (myself included) as his aggressions became too emotionally draining to handle on a daily basis. His teachers tried new therapies and methods, but with little success. Meanwhile, his family appeased him with salt and vinegar chips and Sesame Street on perpetual repetition to keep peace.
Then one day, nearing six months after his expulsion, Jonah finally left for Kennedy Krieger. I’ve kept in touch and been receiving updates from the family blog.
The latest news: He’ll be returning home at the end of the summer, bringing very few aggressive behaviors with him. It’s as if a miracle happened in his life. Here he is during a calm moment last summer on Villanova University’s campus:
Because of the persistence and faith of his parents, the doctors now know how to better treat and handle Jonah, who was discovered not only to be autistic, but bipolar as well.
From this story, it’s clear the fight is not easy. There are roadblocks every step of the way, and I’ve been there to experience them. I’ve been there when it feels too hard to climb over them, and once, I even backed down.
But for many parents and family members, backing down is not an option. This is why your voice needs to be heard, for the voices of your children and loved ones who are struggling to cry out. Let’s cry out for them. Let’s bring to attention every life, so that no life is overlooked.
