Right the Ship

Hey Y’all! Hee-hee! Have you missed me? I took two weeks off from writing and during that time I went on a much-needed girl’s trip with my tribe to Austin, TX. Four nights and five days of lots of fun and laughter!

The last couple of weeks have been crazy busy. Initially I felt pretty guilty about not posting my weekly blog. My boss (me) is pretty demanding and rigid about deadlines with her employee (also me!). In the interest of self-care, I’ve been thinking a lot about being less rigid. There have been so many times that I am feverishly writing late at night, trying to get posted by midnight. There is simply no reason to put myself through the additional stress. I have plenty of stress already!

The last couple of weeks have been interesting. Now that things have stabilized with Travis, I decided it was time to advertise for a live-in aide. Again. This time around I decided to let a couple of my local Facebook groups know that I was looking for some help with Travis. I was excited when I had a response from a woman that worked with a business that specializes in supporting autistic individuals.

She shared that she had an employee that was driving from Denver daily because he was having a hard time finding a place that he could afford in northern Colorado. She asked me if she could give him my number. Of course!

I talked with her employee on the phone for a bit and we decided to have him come meet Travis and see his home. Somewhere between our phone conversation and when he arrived the next day his attitude changed. He seemed significantly less interested. He said his boss was concerned that he may end up burned out if he worked with autistic individuals all day and then also lived with Travis.

This is a valid concern for sure, but then why did his boss have him contact me at all? It was a short visit, he got Travis’s number and indicated that if he decided not to take the position, they could still be friends. I’m guessing it was a no, I never heard back.

While on my girl’s trip I received a text message from Travis’s case manager asking me to call her. I didn’t see it immediately, so she texted again. She has decided to give notice and stay home with her baby boy. I actually told her when she shared her pregnancy with me that she should try to stay home with her baby if at all possible. I shared with her that if I could do it all over again, I would choose to stay home with my kiddos. I know for sure that Travis would be in a better place if I did.

If I had a do-over, I would home school Travis. I remember thinking about it way back then, but I was convinced he would learn so much more if he attended school. As it turns out, if I hadn’t been able to teach him a thing, he would have still been better off staying home with me. Less sensory stuff. No bullying. I could go on, but I need to focus on looking forward.

Remember how happy I was to find a new psychiatrist for Travis? His primary care physician had put in a referral a few times for a psychiatrist that practiced in the same group. We finally got an intake appointment, and she seems like a good fit. I was happy because being in the same group means that she would have access to his physical health records online. Travis’s team of doctors could all interact with each other.

Travis received a letter a couple of days ago in his online records saying that the psychiatric clinic that employs her and the medical group have enjoyed a collaborative relationship for many years, and it was good to be able to provide mental health care in a primary care setting which was convenient for patients.

But, due to systemic changes in delivery of care, his health care company can no longer continue this integration of care. Deep sigh. He will still be seeing his new psychiatrist; she will just not be coordinating care with his other doctors.

A step forward. A step back. Amazingly enough, all of these things, and I’m doing ok. A live-in aide with autism experience. Nope, not happening. A case manager that knew what she was doing and adored Travis, moving on. She also told me that Foothills Gateway was short several case managers, so brace myself. Excitement about the prospect of Travis’s care being a team effort. Not anymore.

I’ll share with you why I am still feeling energized. Rejuvenated. And it’s not just the self-care and the girl’s trip.

Remember my last blog post? I shared the letter I wrote to the higher ups at the two hospitals where Travis has been an emergency room patient on several occasions due to mental health crises? The letter worked. I received a call from a patient representative the very next day. He said the group would like to meet with me if I was willing. Yep.

He said that he would get back to me when they figured out a time that would work in all of their schedules. He called a few days later. The date he offered happened to be the day after I returned from my trip to TX. I talked very little about Travis for most of the trip because it was respite. Me time. But I did visit with my tribe about the upcoming meeting. I shared that I was feeling a bit intimidated.

My friends reminded me that I would do great. That I had a way of sharing our experiences with just the right amount of emotion. They gave me advice. They said all the right things. There is a reason these ladies are my tribe.

I was well prepared for the meeting. I had read through years of notes in Travis’s online health file. I took notes. I woke up the morning of the meeting and no longer had the intimidated feeling. I ended up not referring to my notes at all.

I brought pictures of Travis with me, including one when he was a newborn and one from very recently. In the pictures he was doing life. Horseback riding, riding his bike in a parade wearing his boy scout uniform, BMX bike racing, holding a turtle, at a Rockies game, fishing, and cuddling with his dog.

I shared that I brought the pictures for a couple of reasons. I wanted him to be at the meeting with us. He is not just a name in a file. I wanted them to meet the Travis we know. The guy behind the mental illness. The only Travis they had met to date was the Travis in a mental health crisis. The guy in the pictures. That’s Travis.

We talked about the room Travis spent approximately 30 hours in. Travis came in asking for help and instead he received a punishment. There is just no other way to consider that room. No one would spend 30 hours in there willingly. I told them if my son had been driving drunk and drove through four people on a sidewalk, killing two of them, and hurting himself, he would have been in a hospital room. I told them that Travis told me during his stay, mom, don’t be upset, I’m used to being treated like this.

I explained that the room (closet) would in no way be comforting to anyone, much less someone having a mental health crisis.

I shared that Travis was not offered anything to make his stay more comfortable. That his parents had to ask for a pillow, for a blanket. For food. I told them the reason we wouldn’t leave his side was not to protect their staff from him. It was to protect him from the hospital. We simply were not going to allow him to be released. It ended up being a good thing we were there, we had to constantly advocate for his care. We had to ask for his prescriptions.

I told them we were told Travis would be transferred to a hospital room. Only he wasn’t.

We talked a lot about communication and lack thereof. The only time we brought Travis to the hospital was when we were in crisis. Yet not once did we have an opportunity to speak to a psychiatrist. It had been our experience that the on-call psychiatrist would not come in. They would tell staff that because Travis was seeing a psychiatrist, a therapist and was medicated, we were already doing all that we could do.

What if a psychiatrist from the hospital took the time to talk to us? They would have learned that we were having great difficulty getting him stabilized on his current medications. Maybe even changed his medications. Maybe Travis would have been introduced to lithium years ago. Saving him and our family years of distress.

I told them if they were only going to put out the infernos and basically ignore the smaller fires, it was just a matter of time before the smaller fires grew to become an inferno. Travis was at the inferno stage.

I shared that I had to become the ugliest version of myself in order to get their staff to take our situation seriously. That shouldn’t be the case. I told them that their staff shared with me it was going to be impossible to find Travis a bed because he is autistic and has an intellectual disability. It is a grave injustice to ignore this population as if their mental health is less important than any other person’s health.

At the meeting they shared that Colorado has a shortage of hospital beds. I get that. I wouldn’t be asking for Travis to be in one of those beds if it were not absolutely necessary. I asked them to share his success story when trying to find a bed for the next person like him. He spent 10 days in the psychiatric hospital and is currently more stable than he has been in years. I also reminded them that Travis might not have got to the point he so desperately needed that bed if he had better care in the past.

Which reminds me that I want to write a letter of thanks to the hospital that said yes. Under duress but said yes. To tell them how grateful we are that they did, and how much better he is doing. So that maybe they will give the next individual with his diagnoses a chance.

And maybe write a letter to those that denied him due to his capabilities. To tell them to give the next individual like him a chance. It is in his online notes which hospitals had a bed but still said no. Hospitals that were much closer to home. Deep sigh.

I shared the lack of communication even happened upon his transfer. I didn’t know to bring his prescriptions, so the next hospital had evidence of what he was currently taking and get him started on them right away.

The hospital’s patient representative had sent me a letter and his card with the day and time of our meeting. The letterhead said Risk Management on it. His card said Patient Representative and Risk Management Specialist on it. I assured them that I was not there because I was thinking of suing them. My sole purpose was to effect change.

The patient representative admitted that it was confusing for his card and letterhead to say Risk Management Specialist on it. He said the group wasn’t meeting with me to mitigate risk. They were there to learn from our experience. I certainly hope that is truly the case.

I felt heard. I felt validated. The group was apologetic, they took notes. The Behavioral Health Manager said that they were working to “right the ship”. She mentioned that it was a huge ship, and it was going to take some time and a great deal of work. My understanding is that meeting with me about our experience is part of that work.

Both she and a senior director asked if they could share our story in training their staff. When I said yes, they asked if I could email them a few of Travis’s pictures. They each followed up by emailing me so I would have their email addresses.

When the patient representative walked me out, he told me that Travis is lucky to have such a strong advocate.

I feel a renewed sense of purpose. It’s amazing how when Travis is doing better, I am not expending all of my energy trying not to sink in the quicksand.

“The sea finds out everything you did wrong.” - Francis Stokes

“Anyone can steer the ship, but it takes a leader to chart the course.” - John Maxwell

“Now bring me that horizon.” - Captain Jack Sparrow

Here are the pictures I shared.