Transitions

Sometimes things happen in life that force you take stock. As some of you may remember it was about this time last year that our son began to deal with some life-threatening issues including several suicide attempts. As a family we struggled to support him, we learned more about the mental health care system in PA  and in particular, the Wellspan version of  “behavioral health”. Most of all we learned that there was no system and there was no care. Our son came through this year because of his own strength, because of the love of his family and friends, and because we found an amazing program, the Anasazi Foundation, that helped all of us see the power of WE, and the importance of creating a belonging place.

Well, it is spring, right? It is a year later. So, this must mean another transition is upon us. And, sure enough, here we are. Both of our boys – 12 and 17 – left the school they had been attending since we came to PA in 2009. This week they started a new school, the public school in our district. Yes, there are only 2 months left in the semester! I cannot even put into words the anxiety I have experienced anticipating this week for them. And, if I had this much anxiety how must they feel? How can we survive more upheaval and insecurity and all of the things that go along with a transition such as this particularly in the context of the hell that our family has been through this last year.

We survive by trusting our children. We survive by trusting that sometimes things are not what they seem and change is the only option.

The boys jumped right in both feet. After a weekend of fishing and reflection of course. I was sick all day Monday just thinking of what might happen, what they must be feeling, were we making the right decision…and, on and on and on.

Trust your children. Our younger son came home and looked at us and said, “Today was my best day of school ever!” It took everything I had to not sob all over him. Really? Best day ever? Yup, best day ever. “I was totally accepted.” Who can argue with something we all take for granted, acceptance. And, no one called me a faggot because I have long hair. Oh, and cute girls.

Our older son started yesterday, again with the nerves, worrying, looking at the clock. While not as enthusiastic as his brother -he is a teenager- he said it was pretty good, and that he knew it would be a good place to be. His big thing was support. And he has been supported by his peers. I knew all was right with the world when he pulled up in a friend’s car at 345p at the house, on his first day. Oh, and that friend, an 8p curfew. Sweet.

So, now dad and I can breathe. We trusted our children. We had not been listening. Now it’s time to trust, to listen, to believe. Will they have bad days? Of course. Will we have more transitions? Of course. Will we survive them? Absolutely, as a family and with the strength of our love and our will to rise above.

As I was considering this post I ran across a blog called Parentfurther and they have this advice for supporting your kids through a transition like this:

C.H.A.N.G.E.S. – 6 Tips for Supporting Kids When They Change Schools

http://www.parentfurther.com/blog/changing-schools

Depression, the Secret We Share – a Ted Talk for all

I’ve neglected you lately, I know, and for that I am sorry. But, let me get things rolling again and help to frame where we’ve been and we’re going with this blog by inviting you to spend a few minutes listening to Andrew Solomon. He starts by saying he “…felt a funeral in his brain.”  I’m off to class to teach my students and hope they gain something from our time together, then I’m off to home where I’ll reunite with my family after our long day. It’s home where I hope that I can help to provide a positive sense of the world and if nothing else, a place to feel safe and loved and wanted. As the Anasazi Foundation reminds us, home can be that belonging place, that place of We. Listen, Learn, Feel, and mostly, be present.

Depression, the Secret We Share – Andrew Solomon, Ted Talk

The Power of Empathy – An amazing reminder

Many thanks to my friend Kathryn for sending this along just when I needed it! And, on the very day I posted my lastest blog on That Mom. We need more of this.

http://www.youtube.com/watch?v=1Evwgu369J

That Mom

A fitting title for what has been my life for the last 7 months. I suppose it’s the judgment from other parents that is the hardest to comprehend. We’ve been open, for the most part, about what has been going on in our life over the last 7 months with our son and the challenges we have faced. Maybe that’s the problem. It reminds me of the time when my children were little, perhaps our oldest was 8 at the time. I called a friend of mine who had older children and asked for some advice. The conversation went like this:

I called her in a panic and said, “You won’t believe this…I don’t know what to do so I’m calling you since your boys are older. My son has lice and I’m totally freaked out! What the hell am I supposed to do?”  She replied by saying, “I don’t know, we’ve never dealt with that.” Oh, I said…feeling a bit dejected, immediately regretting have reached out. I said, “Okay, well, we’ll figure out.”  So, I hung up the phone thinking, shit, are we the only ones? What’s wrong with Us? I know it’s that kid down the street who always stays too long, maybe doesn’t get what he needs at home, maybe…wait, that’s not right. It doesn’t matter who or what. I was feeling totally isolated and scratching my own head since really even thinking about lice makes you feel, well, you know. So, I got on the internet and started searching and reading. Realizing that we might not have enough freezer space for that needed to go into the freezer, or at least that was one theory, freeze them out. And then a little while later the phone rang. It was my friend, calling me back. She was hesitant and then said, “I lied to you and I’m so sorry.” I was confused. I asked her what she was talking about. She said that yes, both her boys had had lice in the past. She didn’t want me to judge her. It wasn’t something people talked about. I said, really? What’s the big deal? How do we share information and support each other if we don’t talk about it? Well, that needs to change! I told her I felt sad because she must have felt alone and ashamed when it happened to her family.

I feel that way now. I’m That Mom. We’re That Family with That Kid other parents aren’t sure of, the family that might not be “right” because there might some issues. And, the classic “there must be something wrong with his parents” for him to be acting like that.  Perhaps these other families were okay before they knew otherwise. And again, I can’t help but think, really? So, we’ve been open about the depression, the suicide attempts, the hospital stays. Now we are faced with the stigma that comes with that. How will that ever change if we don’t talk about it? Are we the only ones?  We have made our life more difficult because we aren’t hiding behind the wall of shame that accompanies mental health issues.

Why is it okay to send cards when someone is sick, sign a cast when someone comes back to school, but this, this is something else. This comes with side glances, stolen looks, whispers, turning away, not making eye contact, events that come and go without invitations. This also comes with our son having other kids tell him to finish the job, suck it up, get lost. He is facing issues because of his own openness that we as his parents aren’t even aware of. I can’t imagine the pain that comes with having your peers reject you sometimes in very public ways. It hardened his heart and led him down a path he is trying to find a way out of.

I’m here to shout out loud that I’m proud to be That Mom. I’m also exhausted, isolated, sad beyond belief, and sometimes ashamed but never about my child. Only about the society we live in that judges others while at the same time refusing to look at their own lives and not seeing the opportunity to grab a teachable moment while it stands in front of you, waiting…for a smile, a nod, a kind word, an invitation to be not just an “other” not just That Mom or That Kid.

I know our son is lonely and confused sometimes. I know he wants to reach out, be included. And he is included sometimes. He has some good friends that do what they can. Those are the friends with parents who have also reached out, check in, and support us. They model this good behavior; help develop a sense of empathy in their children.  Then there are the others. I have mixed feelings about them. About those parents that talk – not to us, but about us.  They talk to their children, even if they don’t talk directly to them, they get the message. Our children are much more astute than we give them credit for. My feelings waver between those of empathy for them and frustration and sadness. I understand that fear is what drives us in situations that are novel or seem to be something they aren’t and we don’t understand. This is the space where all the “isms” live. This is also the space where we can come together and find common ground. Our humanity is what connects us.  When we see others as less than us it’s easy to treat them as less than, to justify our actions that give us permission to disconnect from them, to create that space that divides We into us and them.

My son is an amazing person. He is caring, sensitive, intelligent, a musician, an athlete, a big brother, an outdoorsman. The world is a harsh place when you feel like you don’t belong. When you feel like people see you as something less, as an Other.  It’s tough enough to be a teenager these days with social media, peer pressures that didn’t exist when I was younger, trying on different selves, identity, relationships, that place between adolescent and adult, independence and the fear of leaving your comfort zone. It’s a sad and heartbreaking cycle. But it also can help to move us forward, and if we take the time to look back, see the shape of our foot prints, to reflect on where we’ve been and how we got where we are, we might actually be able to make a difference.

My son is looking back right now. He has an opportunity that is helping him to see things more clearly. The clarity comes from not being around those who judge, those who expect something you can’t give, from being away from the whispers, the side glances, the shouting on social media. He is spending 7 weeks learning how to walk forward in his life. Many of these concepts have come to us only recently – walking forward or backward in our lives, a heart a war or peace. This new language is helping my family see things in a new light. Frankly, I would probably still be angry and still feel hurt by how we are treated by some if it weren’t for this new way of thinking.  There are a lot of us that could learn something from the philosophy of the folks at Anasazi (www.anasazi.org) including how not to have a heart at war and the importance of the concept of We.  My hope for our son is that upon his return he will be able to face those people and just smile his beautiful smile, and walk forward.

My hope for those that justify their actions of treating people as less than, and as “others” is that they too find peace in their lives and find a way to walk forward instead of backwards, that their fear is replaced with empathy and compassion. Sometimes it takes a personal experience to see things clearly. I hope it doesn’t take a story like ours in their lives for that to happen.

I’m proud to be That Mom. I’m proud to have That Son. I’m proud to be supported by amazing people who live life authentically.

A Broken System: How to Keep Your Child Alive While Navigating the Mental Health System (repost)

I am now reposting this in my new blog, That Mom – Mental Health and Other Crazy Adventures. This was originally posted June 18, 2013. I  thought it was important for this topic (these topics?) to have their own forum. Thank you to everyone who has followed my Lonely Gerontologist Blog. I hope you will find this blog interesting as well. Below is the original post:

My family has been immersed in a life-altering crisis for about 2 months, since April. My son became very depressed and tried to take his own life. We were very lucky that his attempt failed. But, besides dealing with all of the emotions and issues that come with severe depression and suicide attempts we were also thrown into a system that we knew very little about.

I’ll save you the sad and heartbreaking details that we continue to deal with on our end within the family. What I will share now are the disgusting details of a sick system that continues to leave our son in the cold, without care, and worse, a system full of people who could care less about his story or the urgency or the fact that we are just treading water trying to keep our son alive.

In the last 45 days our son has spent 19 days in two different in-patient psychiatric hospitals. Anyone who has any idea of what goes on behind the scenes to get him where he needed to be can already feel our pain. Throw in Wellspan Behavioral Health and Dr. Madapoosi and Dr. Talley. I won’t even bother you with the 8 hours we spent on a Friday when we found out about his second attempt, trying to get him in to Philhaven in Mt. Gretna, PA without putting our son through the trauma of the emergency room and crisis intervention. They did not let him in because we went through our pediatrician and his therapist. Nice. We’ll manage at home and take shifts checking on him to make sure he’s still alive.

Back to Wellspan. So, here’s what they tell visitors to their website:
“Regardless of the level of care, WellSpan Behavioral Health is committed to enabling patients to better cope with the stresses that brought them to treatment. Our goal is to provide the most cost-effective, least restrictive care and to provide innovative alternatives to treatment and maximize outcomes. Together we will partner with you, your family and other health care providers to get you the care you need to take control of your life.”

I’ll break this down from our perspective. They have Added to our stress, they have put up Barriers to access, least restrictive – that’s actually funny. Okay, not funny Ha Ha, but funny. And, a partner in his care? Again, Funny. And finally, getting the care we need and having control over lives? Well, you can imagine how I feel about that and I’m not even to the details yet.

The details include mental health professionals refusing to do their job, a teenager hanging on for dear life, and family in turmoil and standing helpless in the face of bureaucracy, burn-out, and incompetence.

Our son’s suicide attempt came less than two weeks after he was discharged from his first hospital stay of two weeks. He told no one. He told no one for 3 days. When we finally found out we worked hard to get him somewhere that would not just stabilize him but help him to walk out feeling like maybe he could get through this crisis and have the tools to face the next.

I placed a call to Dr. Madapoosi with Wellspan Behavioral Health. Made sense to me. He was the psychiatrist on record after my son was discharged from his first hospital stay. He met with my son 2 days after his suicide attempt, although he still said nothing to the dr. When I talked to Madapoosi he was cold, abrupt, wondered why I wasting his time. I asked him to help us gain access to a facility that required a call from a psychiatrist. I told him that we were in a life-threatening situation and that David had attempted to complete suicide and please, would he help us. This is what he said to me: “you want me to call places? I don’t have time for that. I don’t have time to call your insurance company. Take him to the emergency room.” I was stunned. I told him that I had already been in touch with the insurance company (Highmark has been amazing!). He was rude, scolded me for not having a follow-up appt. I stated that we didn’t make another appt because we weren’t sure where we would continue his care. There was no hope he was going to help us but that comment ended any chance. He said not only was he not going to help us but he wasn’t going to accept another doctors diagnosis so that is why he took him off the depakote and put him on Wellbutrin. Sweet.

We did manage to finally get our son into Brook Lane in MD. They were great, better than the previous facility. An interdisciplinary team approach to his care. Finally. I talked with Dr. Burke, his main doctor, every morning. I also let him know that Dr. Madapoosi should not be listed as his doctor on his discharge papers. They would help me find another doctor. They did. This is where the story gets even better. I know right? How could it get better?

My son’s appt with the new dr., Dr. Talley, was to be this week, on Thursday. Yesterday I received a call, while my son was in his therapy appt, from Tammy at Wellspan Behavioral Health. She informed me that my son’s appt needed to be canceled because we should have made the appt with Dr. Madapoosi.

My response: “Are you telling me that my son, who was just discharged from the hospital for trying to kill himself is having his scheduled appt canceled?”

Tammy was quiet for a moment and informed me that the appt should have been made with Dr. Madapoosi because he is the doctor on record. I explained to her that we did not want to continue with Dr. Madapoosi and that Dr. Burke arranged for the new appt.

Tammy informed me that she would have to check with Dr. Talley to see if she would be willing to see him. She would call me back. Thanks.

Today I received two phone calls. One from Tammy telling me that Dr. Talley was now not available at the time his appt was scheduled. She had a meeting. Nice. Funny that she didn’t when Dr. Burke’s staff set up this critical, part-of-the-discharge-crisis-plan appointment.

The second call was from Amber, Ashley, it doesn’t really matter. She said they wouldn’t be able to do anything until I called back to give them a reason why we did not want see Dr. Madapoosi. Really? Is this protocol? Do we, as consumers, now have to give a reason why we switch doctors, practices, plans, etc?

So, as it stands now, my son does not have an appt with doctor who can help him with his diagnosis, help him get his meds straight, help him get to a place where he is comfortable with his new diagnosis and feeling good because he finally has the right medication at the right dosage.

The past 6 weeks have been a challenge for us as a family. But more importantly, it has been life changing for our son. We have a new normal now. We need professionals who can help guide us through this maze that is the mental health system. We need professionals who still care about their patients and their well-being. I’m saddened at the thought of others who don’t have access to mental health, who don’t have wonderful insurance like we do and perhaps most importantly, who don’t feel empowered to advocate for themselves or their family members. I’m mad as hell and when I come out of this fog that has been our life for these past few months I plan to take my anger out in a way that has some impact not just for us, and in my son’s name, but for others as well.

I’d love to begin collecting stories like this. Stories of bureaucracy over care, stories of the helpers who don’t help, stories of a failed mental health system that leaves us feeling even more helpless than the issues that brought us to a point where we needed to seek help.

So, how do you keep your child alive while navigating our broken mental health system? You fight like hell. You learn as you go. You don’t give up. Use your social capital. Call on your friends (thank you Robin, Kristen and many others) to tap their knowledge base, their contacts. Call on your family for support and love – you’ll need a lot of this as many of you already know.

My son is alive. We fought like hell and now he needs to fight like hell, for the rest of his life. He doesn’t know that these doctors don’t want to see him. That he isn’t important enough to them. That his life doesn’t matter to them. That can wait for another day. A better day.