I’m a Gen-X mom to one child, Jonah Russell, who was born on March 7, 2002.
When Jonah was just 6 weeks old, our family doctor noticed he was staring at lights instead of faces. We kept alert and, little by little, saw that Jonah wasn’t developing like other neurotypical kids.
By the time he was 18 months old, we were tapped into early intervention services. Three different therapists came to our home each week to work with Jonah. By 22 months old, he was officially diagnosed with autism. And before he was three, my husband Andy and I enrolled him in a preschool class at Wildwood, a school for children with autism and other neurological disorders. He thrived there and learned a lot, and though he posed weird and tiring challenges, we were holding our life together.
In the summer of 2010, when Jonah was 8 years old, he started to “swat,” making the motion with his hands and hitting whomever was within reach. Though it was not a huge deal at first, he quickly began to develop increasingly aggressive behaviors whose cause neither his school nor we could discern – no matter how we charted it, what meds we finally decided to try, or how many Hail Marys his grandma said.
By the end of that year, Jonah became so violently aggressive we were at the end of our rope and out of choices. We heard the same thing from Jonah’s developmental physician, his psych doctor, and every teacher at his school: Jonah needs residential placement. Initially we fought the idea itself, let alone the reality. We fought so very hard.
Eventually, though, Jonah’s school told us he could not stay there. We knew why; at home he was smashing windows and TVs. He was throwing things on the bus and in the car, nearly causing accidents. He was hurting Andy and me, other children, his teachers, strangers out in public, and himself – to the point where I was afraid someone was going to get killed.
When it became a matter of both sanity and safety, we reluctantly sought the best residential school, as close to our home as possible. The months we spent waiting for an opening were the hardest months of our lives.
On August 16, 2011, our son was admitted to the Anderson Center for Autism, an hour and a half away. After having suffered mental breakdowns requiring hospitalization (within 2 months of one another), Andy and I separated and have since divorced.
Andy moved downstate so he could live close to Jonah, which is wonderful. We remain friends and visit with Jonah together once a week at Andy’s apartment (though Andy sees him more often on his own). Jonah does very well at his school; though he has aggressions, they have mitigated in both frequency and severity. He’s learning important life skills and has a team of people who work tirelessly toward a future where he can be as safe, happy, and independent as possible.
Jonah’s life is filled with people who love and care for him. There are failures, and the successes seem to come in inches when we’d prefer miles — but we see progress, and we are grateful.
If you’re in a situation like this, please know you are not alone. Yes, it hurts almost like a death. I often struggle to get through the days and I miss my son every moment. But it gets easier in a lot of ways, especially when there is amazing growth and progress, and I can see the teachers and caregivers acting with dedication, compassion, and very specialized knowledge.
My blog is an attempt to present a non-sugarcoated, honest portrayal of our lives. Oftentimes it isn’t pretty. We don’t always make the right choices. I am not even close to a perfect mother, but I love Jonah fiercely and completely.
If you are here to judge us, keep it to yourself. If you think you could have done (or are doing) better, congratulations…nobody cares. If you have a question, feel free to ask. Just please be respectful. If you need help, I will try to find it for you. And if you just want to read, I promise one thing: it’s not a boring story.
Thanks for visiting!
Frequently Asked Questions:
Seriously? You were beaten up by an 8 year old? Yes. Many, many times, both Jonah’s dad and me together couldn’t hold him safely. You’d be amazed how strong he could be. One day I had to call a crisis team and the police; it took four police officers just to get Jonah from the patrol car at the curb to the entrance of the Capital District Psychiatric Center.
You say his aggressions and violent behavior have mitigated. Why not bring him back home? I wish it were that simple. At times Jonah’s behavior has improved only to get worse again. During the period of time between October 2015 and January 2016, his school declared him “in crisis.” In March of 2016, they started the process of referral (finding a different school for him). At the time of this writing (August 2016), the medication Clozaril has again mitigated the aggressions and Jonah is somewhat stable.
Why don’t you see Jonah more than once a week? Well, he’s an hour an a half away with no traffic. I’d go see him anyway, but his school does not allow visitors at the residence, and I can’t handle Jonah on my own safely. Also, Jonah doesn’t want much of anything but car rides lately. The visits we do have mostly consist of riding him around in Andy’s car and listening to music; that’s all Jonah wants to do these days.
I recommend the following novels which address autism and other disabilities:
The Speed of Dark by Elizabeth Moon
Rules by Cynthia Lord
Mockingbird by Kathryn Erskine
The Curious Incident of the Dog in the Night-Time by Mark Haddon
Out of My Mind by Sharon M. Draper
Wonder by R. J. Palacio
Fish in a Tree by
Please tell me what your own favorites are.
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