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As We walked into the lobby at Kennedy Krieger Institute in Baltimore, and were greeted by a team of strangers that somehow felt like they’d always been Daniels caregivers, I could feel the relief of the last few days begin to ease. Possibly even the last few years.
Less than 24 hours prior, Daniel – then 12 years old, had been in patient at Seattle Children’s Hospital Mental Health Unit. The treatment he needed was not available there, but they were keeping him safe for me so I could re focus and find the energy to bing him home again and keep up the marathon that was me keeping him safe. Alive.
But this time was different. Daniel was discharged from Children’s Hospital and this time we drove straight to the Airport and boarded an overnight flight to Baltimore, a city I hadn’t been to yet but have since grown to love. I’d never been so nervous for a flight, not having any inclination as to how Daniel would behave, if we could even get him on said airplane- which did end up being very difficult.
But at last there we were, Baltimore, at the doors to a facility we had been fighting to get Daniel into for over 18 months. The Kennedy Krieger Institute’s Neurobehavioral Unit. ( NBU).
Upon arriving, the NBU staff asked to take Daniel up to the unit while I went in a different direction to tackle paperwork. Having not slept in over 24 hours, Daniel promptly fell asleep once on the unit, and I painfully, fueled only by strong coffee, tried to be coherent for his intake interview, between bouts of tears and a desperate need for sleep.
I told them how it began, around age 5, when Daniel never seemed to stop moving. At first it was exciting. Daniel had been a very sick infant. Tube fed, always needing to be positioned just so to optimize breathing and digestion. He did not sit until 18 months or walk until about two. So seeing him run around was something we relished. At first.
Daniel’s roaming the house, changed to fleeing the house. Over the years we found him on multiple occasions inside various neighbors homes, out in the culdesac, he’d escape to the back yard multiple times an hour on any given day. It’s not that we didn’t watch him. It’s that sometimes a mother needs to pee, or tend to another child, or turn her back for three seconds and it was during those moments that my brilliantly opportunistic borderline non verbal son would make his escapes. It was the night we found him on the roof, having escaped through his bedroom window, that we realized just how much help this child was going to need.
By the time Daniel was admitted to the NBU, he had spent well over a dozen stays at the Behavioral and Medical Unit at Seattle Children’s. Each stay averaging 5 to 10 days.
Our home safety protocols were on par with maximum security facilities. There we keyed locks on both sides of all doors leading outside, coded electronic locks as well. Daniels bedroom window had reinforced plexiglass on the bottom half, allowing just enough room for him to be pulled out in case of fire, but preventing an escape.
Our Kitchen was sparse. All knives and medications locked away from a curious little boy. We only had paper plates and maybe two mugs. About a year prior Daniel had discovered a joy of watching glass smash and compulsively threw plates into the air , plug his ears and scream, as the plate smashed back down. With or without food on them.
Daniel’s siblings knew to where to hide when either enthusiasm for life, or anger prompted another plate and chair throwing session.
Lastly, we had most electronics either thrown out, or closely guarded. Daniel had developed such deep curiosity of how things worked, which again, we embraced at first, but soon came to regret. His curiosity switched from the mechanics of electronic items, to a compulsive need to find batteries. And if the item did not contain batteries, he would disassemble it, and smash it to bits until he was positive there were none. Nothing was safe. All of Daniels toys were destroyed, as were those of his siblings. Clock radios were next to go. Video game controllers, remotes, dvd players, iPads and hand held video games all went the way of death by screw driver as well. It was rough ( and expensive!).
I shared all of this and more during the hours of intake meetings at KKI. Daniel’s new team seemed very prepared to take on the tornado that was my son. It broke my heart in half, but I also couldn’t have been more thankful for this long awaited opportunity.
With four other children waiting for me back in Seattle, I was only able to stay with Daniel for two days before my flight home. Was it terrifying to leave my son in the hands of strangers on the other side of the country? Absolutely, I sobbed. But, believe it or not, and maybe you can, because you’re here for some reason, but I was so tired, so worn out from keeping him and his siblings safe, that I was relieved to have him be cared for. He was exactly where he needed to be, where he was fortunate to be. He was one of the lucky ones.
I flew home, knowing I’d be back in a few weeks to check up on my Daniel.
Over the course of the next few weeks, Daniels new team took infinite amounts of data. Sometimes staging situations, other times taking him out in public to get a baseline of his behaviors, tracking the number of times, he self harms, runs away, or tries to destroy something. They got to work on car safety, community safety, learning to eat at the table with others and actually stay put for the meal. Daniel’s team also identified Daniel’s favorite toys and activities and created a plan to let him enjoy these toys with out either destroying or becoming over stimulated by them.
Over the course of Daniels stay, his math skills went from kindergarten level to that of a second grader, and his reading when from second to fourth grade level. He found a love for bowling and Chick Fillet! Daniel learned to feel safe within the very clear, very specific boundaries and expectations the team had created for him. There was not negative punishment at this facility, just clear expectations, and enough staff to physically block the negative behaviors such as running away from a task, if necessary.
After several trips back to Baltimore, and marveling at the progress Daniel had made each time, I still didn’t feel ready for him to be home, scared from his history of acting good when the spotlight was on him, but letting it all go once home, I was bracing for the worst.
For Daniel’s final week in the NBU, his father and I flew out for parent training. To say it was overwhelming was an understatement. It took a tremendous amount of trust to believe I could handle it at home. I had forgotten though, that Daniel required 24 hour arms reach supervision at home, and negative things still happened constantly, so running programs for him at home, during his waking hours, would end up being small in comparison, with us as parents calling the shots, dictating all of his daily activities and the time he’s allowed to spend in each one.
And that is exactly what we’ve done.
Daniel has been home for about five months now. We enjoyed thanksgiving dinner together, on chairs, with real plates. My heart was so proud. Daniel has worked so hard and we have a fresh take on life with him. We still must run his programs, all waking hours, but KKI’s team incorporate down time into the program such as DVD time, Computer time or Play alone. Daniel now understands (usually) to stay within the zone for each activity, he does not argue when his timer sounds and it’s time to move to the next. He trusts that his preferred activities will come around again soon.
Not only is he thriving at home, but we’ve seen tremendous gains at school. Daniel’s reading went from second to fourth grade level, and his math from kindergarten to second grade. He’s been calm enough in the world around him to find joy in water color painting, and a love for Bowling. Just this month Daniel became a state qualifier in a district wide art competition.
What a moment to see my sweet boy enjoying a real success, the pride he had for himself. We all celebrated.
Some days I’m tired and wish I didn’t have to run programs, but then I remember the smashed glass, the screaming, the panic when I couldn’t find him, and am reminded how his tight schedule is small in comparison to the stress of how we used to live.
In January of 2019, Daniel was taken off of the state list for children needing out of home placement and he continues to thrive at home, hopefully for years to come.
Written by Amy Amirault
Be sure to come back soon for more stories of families that have had desperate need for an NBU in Washington State and Beyond.