Things on the Jack front have not been quiet.
Despite having a rotating supply of caregivers, his own house–which is a controlled environment with fewer rogue factors, and a team of educators doing their level best to meet his needs, Jack’s behavior continues to be somewhat erratic.
We’ve had long meetings with the school. We read daily email updates on Jack’s school day. His caregivers take him to the doctor all the time in an effort to stay on top of ear problems.
Last Friday, I met Jack and two helpers at Primary Children’s for an eventful (read: crazytown) ENT appointment and then drove downtown to the behavioral health clinic to see his psychiatrist. It was six hours of Jack, which I used to do all the time, and yet this time, I was exhausted.
Jack’s needs never ebb. If anything, they tend to peak at times, requiring more than the average (which compared to many is already greater than average) level of care. Staff who work with Jack tire quickly. All of this is stuff I know intimately because I learned it over the many years when I was the default caregiver. It was my job, and it wasn’t a job I could quit.
The neuropsychiatric hospital recommended that Jack always have one-on-one care as he needs constant attention and rotating activities (every five to ten minutes). This was their official treatment plan, along with requiring Jack to follow through on instructions received and vigilantly monitoring him for signs of being overwhelmed, in order to head off problem behaviors before they happen.
These are all things I think I’ve always known, but which are almost impossible to achieve when you have LITERALLY ANY OTHER FACTORS IN YOUR LIFE, i.e., other children, dinner to make, laundry to do, a job, errands, cleanup, and a home where neighbor children and the UPS guy are dropping by and changing the dynamic of Jack’s home life.
Even now, when he is without any housemates (temporarily), and receiving one-on-one care at all times, Jack still has occasional outbursts requiring that he be restrained.
The hospital also maintained that “curing” Jack of aggression isn’t going to be a reality. We can only work and hope for fewer and less intense aggressive behaviors. It’s kind of the “there is no cure” conversation. Also the “this will persist in some form or another for the rest of his life” conversation.
At school, Jack now has his own separate classroom. It’s a more controlled environment, without the unpredictability of other students. His team works two-on-one with him for instruction with a workable communication system, all while maintaining a routine he can tolerate.
He had two good days at school after returning from his month at the hospital. And since then, he’s been kind of a disaster at school. He’s been hurting staff and destroying property. He acts sick, but when his caregivers take him to the doctor, he’s not sick.
All of this makes me wonder if he’s sick of the struggle. Is he just beyond frustrated? Is it the massive growth he is undergoing as a teen? Does he legitimately feel just terrible? Or does the fact that he points to the card on his communication board reading “sick” simply indicate that he’s sick of all of it–not being able to speak, not being a typical teen, not having a say in so much of his daily experience?
Jeff thinks I’m projecting my own wants and needs on Jack when I wonder things like this. But how can we really know?
This is when I feel utterly helpless. I can go to his appointments and talk with the school and pray and pray and pray and pray. But ultimately, I can’t fix anything.
This is when I’m all, “Jesus, here is the steering wheel. Please please take it.” He’s Jack’s brother, too. He’s his Savior, too. He’s knows Jack’s inner life better than I do. He is capable of effecting the real change Jack needs.
It’s not as easy as it sounds, turning it all over to whatever God wants to happen in Jack’s life. But we’ve been doing this for some time now. When we hand it over, the solutions eventually come.