Seattle Children’s Hospital already has a Psychiatry and Behavioral Medicine Unit (PBMU), why do we need another one?

There is a PBMU at Seattle Children’s Hospital and it’s an excellent program that serves it’s patients with short term care for acute psychiatric illness.  The PBMU runs excellent short term programs for patients in crisis.  It is a calming environment, bright and clean with caring knowledgeable staff who clearly care deeply for their patients well being.  This program however is not designed to treat severe behavioral issues that are chronic in certain special needs children.

I know an Autistic child that went to the PBMU and that was enough, why do you need an NBU?

For some children, a quick stay in the PBMU is enough to get things back on track.  Slight medication adjustments and some parent training can at times be sufficient.  In other cases, those of children with severe self harm tendencies, pica, violence , eloping, and intense repetitive behaviors, a short stay in a low stim environment that is not set up to mimic real world scenario’s serves as little more than a bandaid at best.  A quick break for the caregivers.

The issue is not the staff, not the environment, not even the existing programs, they seem to run well for the patients with acute mental health issues.  They are just not designed for these chronically challenged kids who desperately need in patient behavioral therapy.  

The PBMU does not provide intensive behavioral therapy, they are not set up to replicate real life settings in which these children can learn to function appropriately.  The PBMU is very low stim, with few activities or toys, a space for calm and healing, where as an NBU provides a stimulating environment for the patients to learn skills they can bring home with them such as appropriate play ( learning limits so as not to become overstimulated with toys or activities as is common with this population), not stealing toys from other children ( giving them a sense of mine or theirs), following a busy schedule and therefore strengthening transition skills.  

In the PBMU, with a goal of calming and stabilizing these children in crisis, certain tasks are not pushed on the patient.  If the child does not want to clean up at that moment, they can escape the task, again, in the purpose of calming these children.  On the NBU the children learn in appropriate, safe ways, that when asked to complete a task, escaping is not an option.  After enough repetition, the children find peace and predictability within their schedules.  From here, parent training begins and is a huge piece of the puzzle.  Parents and children train together both at the hospital and in the community with NBU therapists overseeing each step.

The program that Seattle area’s NBU should be modeled after exists in Baltimore.  Kennedy Krieger Institute’s NBU In patient program sees an 80% reduction in their patients challenging behaviors, a number that maintains once the children return home to their own communities and families.

I’m worried my child won’t feel or be safe in an environment filled with the most challenging children that are too severe to be served in a PBMU.  I heard the patients share bedrooms which they don’t do in the PBMU.

I had the same concerns when my son was admitted to KKI last summer ( he is small for his age and was 12 at the time).  I was used to getting notification calls from the PBMU that he’d been assaulted by another patient, hair pulled, slapped, hit in the stomach where his feeding tube is.  My son does not have the instincts to block a hit or sense danger and it was not rare to receive multiple calls during a hospital stay of these type of incidences.

To my absolute amazement, over the course of his two month stay in the NBU, there was only one incident that took place, he was hit by a puzzle piece when a child threw a handful of pieces across the room.  Upon admission, when I asked the staff how they handle assaults and patient to patient incidences, they look at me as though I was kidding in asking this question.  This is just not something that happens on their unit.  Why?  Because each child has a 1:1, at minimum, and from what I observed, it was rare to see less than two staff members to one patient.  The therapists and unit staff are trained to never be further than arms reach from their patient.  They are also trained to move themselves between patients even when casually passing in a hallway, there is just not opportunity for violence between patients.  If a situation does arise, – at one point, for example, a patient grabbed my son’s food off his tray, the staff took it very seriously, moved in faster that I knew humans could, and immediately placed themselves between my son and the patient that wanted his food.

In the PBMU, from my observation of it being a hands off facility, it is the hope that staff can observe and coach the patients to do the right thing.  I once saw my son wait almost 40 minutes to get his iPad back from a child that had stolen it.  Again, their goal is, within a very short hospital stay, calm the patients and bring them back to their baseline.  The less they have to step in the better.  An NBU however, addresses the issues that might just set the child off, and through data, careful observation, and intense therapeutic intervention combined with parent training, teach the children how to handle these impulses and exist more safely in the community.

Other times, at the PBMU, I have found myself stuck in either a patient room, or the bathroom while a patient is being violent just outside the door and the staff has instructed me to stay where I am until further notice.  They too leave the area where the child is being violent, rather than taking control of the situation, the staff, patients and families hide and keep themselves safe.  

As for room sharing, 

Yes, at the Baltimore location, the children do share bedrooms.  The difference being, that there was always night staff inside the bedrooms observing the children, even as they’re sleeping.  

Seattle Children’s Autism Center has a Biobehavioral Program, isn’t that the same thing?

Personally, I have struggled with the Biobehavioral Program.  My son has participated in it twice.  The ideas behind the program is solid, it is designed for families in crisis, struggling to manage their child’s behavioral issues.  Children are seen for either two hours a day Monday through Friday for two weeks, or alternatively, one -two hour appointment a week for twenty three weeks.

On paper this sounded pretty good to me.  Despite the long wait list, we did manage to be placed fairly quickly onto a therapists schedule.  The intake was thorough and the plan seemed solid enough.  Then reality set in.  I now had to transport my child, one hour each way in our case, to the Autism Center in Seattle’s University District.  

This is a child won’t keep his seatbelt on, won’t sit in the seat in the car, likes to throw things out the car windows, including his own legs, and is known to disable child locks and open the car doors while driving and when he can, throws the car into neutral.

Once there, all I could do was hope my son would display some of his behaviors.  Which of course, he did not do.  So week after week, he would miss school, meaning I’d miss out on some personal time much needed to keep the momentum for my son’s care.  He’d play with a toy, not react negatively to the attempts to draw out the behaviors, and we’d drive home.

Then I would wait, 168 long hours, until our next attempt.  This program did not provide enough support for us, or other families in urgent crisis that are struggling to get through every hour with their child.  At times every minute.

Just like handing a flyer on self harm to a parent who is in tears and can’t get her child to stop poking violently at his own eyes, this program only seemed to taunt us with what could be, but isn’t feasible within a two hour per week model.

How bad can it really be? These are just kids right?  Why don’t you just discipline them more.  Do we really need an NBU on the West Coast?

In short, despite my son’s small 55lb frame at the time, our family had to go without kitchen chairs, barstools at our counter, all glass plates bowls and cups, we could not travel in the car, or leave the house with our son.  Due to his needing constant arms reach supervision at home, I could not even use the restroom if alone with him.  I would have to risk his running away, or destroying something- for example regularly running the microwave while empty- for the one minute it would take me to run to the bathroom.  When we attempted to intervene in my sons obsessional destruction, he would respond by biting his own arms, pressing on his eyes and pulling out his hair.  At it’s worse, he would also act out by pulling out his own feeding tube that would require a trip to the hospital to have it replaced each time, sometimes multiple times in one day.

It is that bad, and to professionals that have doubted my sons ability to be this destructive, I have in tears asked them to please have my son in their office while they try to work for one hour, then I would come pick him up and let them tell me if they still thought it was safe for him to be at home.

No one’s ever taken me up on that offer.

The need for a facility like this is beyond urgent.  Just by word of mouth within the Autism community the news that my son was fortunate enough to attend and graduate from KKI’s NBU, I have strangers reaching out to me asking how the program was, and how they can get on the wait list.

Families reach out to me, desperate enough to board a plane with their violent child, fly across the country and leave them in the hands of strangers in hope of preventing an imminent out of home placement should the situation not change drastically.

Sadly, the three to five year wait for this program is a terribly long time when you need to pee but can’t leave your child unattended for even a moment.

There are over 300 children on this list, and growing.  With only 16 beds in the country, the need for another program like this, one accessible to families here on the west coast, is of urgent need.

The NBU is often the last opportunity these children have before their caregivers have no choice but to have them placed in an institution or long term living situation outside of the family home.  

Without this program, children are put into care homes and institutions far more often than necessary, putting undue financial stress on the state and the families that are left with no choice.  

A few month in a hospital set program that treats these severe behaviors and trains families and caretakers to move forward successfully once the children are discharged, is a small price to pay when viewed as an alternative to life long residential care.

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