Hoss is working really hard at being in control, even dropping his afternoon ADHD dose on days when he is just hanging out. His meds have been steady for some time, his appointments are now spaced out more than before, and we are not dreading the return to school. The administration stacked the cards in our favor this year- the fifth grade had a vacancy, so Hoss’ fourth grade teacher rose to fill it. And, in a totally unexpected move (and by ”unexpected” I mean “totally expected,” a la Professor Doofenschmirtz), Hoss was assigned to Mr. G’s class again this year. Hmmm, a teacher who my boy totally connects with and loves more than anything, and a special educator who gets his humor. What more can a mom ask for?

This, I think, is the year of Little Joe.  The quirks and routines are starting to become more noticable.   I forsee testing, and am going on record with a prediction of PDD/mild Aspergers with a touch of OCD. I hope that any issues can be dealt with by behavioral measures, since the possibility of Little Joe swallowing even the tiniest of pills or anything liquid that is not milk is…let’s just say it would be a challenge.

My goal for the school year? No hospital stays. It’s not so much to ask.

By now I know the answers the nurses and doctors need to hear. I rattled off the history of the previous visits and hospitalizations. I identified her current and previous medications, by name and dosage and treatment schedule. The terminology is almost second nature now- she is not in active crisis, but is unable to ensure that she is fully capable of maintaining her own safety at home. The bipolar tendencies were first diagnosed in September, and her brother’s mood disorder (the ever popular “NOS,” which in layman’s terms means “your kid’s brand of crazy doesn’t fit the current DSM definition”) was diagnosed about 20 months ago. There is no diagnosed history from parents or previous generations. Note that I don’t say there is no mental illness in the parents or previous generations; I firmly believe that there has to be something on both sides that we just don’t have on paper. I can’t accept that I ended up with two children with such significant mood disorders just by the luck of the draw.

The transport to the psychiatric hospital came at 7:30 on Wednesday. We were ready to leave. 24 hours of hospital food and sleeping on a the chair that pulls out to a cot took its toll. I survived the the 35 minute drive, as I followed the ambulance, without significant incident. The blowout I got during that same drive in September remained in the back of my mind.

We got her checked in without a snag. A couple of the nurses recognized her name when the paperwork was handed to them. They checked her bag, noting that everything was acceptable (I learn from experience). She hugged me goodbye and asked if I was coming to visit every day. I promised that we would try to visit, and would call if we could not be there in person. No one cried.

I feel numb and empty. The experts tell me what to do, I do those things, and yet we are not being able to help her. I have come to believe that she needs a specialized school situation, one which provided the cognitive behavioral therapy that she needs to combat the irrational thoughts before they become emotional actions. The medication is not enough. But the specialized school will require many, many hoops to be jumped through. I am in the process of the educational evaluation that has the potential to put her in this type of school without me needing to go bankrupt. But I am scared to admit to my husband or my parents or my friends or the current school that the special school is what I really want for Princess. They fear a stigma, or an inability to re-assimilate to the life we’d planned for her (e.g., attendance at the private school at which her dad is the band director). I fear that the adjustment to a new group of students and a new school will be more anxiety-provoking than returning to her current situation, although she reverts to the harmful behaviors when she is back at school for more than a few weeks.

The more I research and the more I learn, the less I really know about any of this.

(Cross posted on Band Back Together)

The treatment coordinator at our practice began the process of looking for an partial hospitalization program after Princess’ appointment last Tuesday. On Thursday they told us that there was no space currently, but that a space might open this week. Yesterday I got a call that a space had opened up but that I needed to bring her in before her scheduled group therapy session (we’ve reverted to the 5:00-7:00 program every night until we can get her into a hospital program) because the hospital requires a referral evalation that is no more than 24 hours old,and the paperwork needed to be in hand by 4:00. So, the assessment from Friday’s session was no longer valid and last night’s assessment would have been too late to be processed. I left work at 1:00 so I could pick Princess and make one of the open spots. I called the hospital around 4:15 to verify what time I was supposed to bring Princess this morning, only to be told that they  had no idea what I was talking about and that no spaces were available. When I arrived at her group therapy appointment, our treatment coordinator told me that she submitted the paperwork as agreed only to be informed that the space promised a few hours earlier was no longer there. Best case scenario is an opening on Thursday or Friday, but it’s more likely to be some time next week. And so we wait some more, trying not to be overwhelmed by the concern that each day out of a therapeutic and educational routine means more difficulty adjusting back into the routine that one would expect for a 12 year old girl.

I was home with Princess on Wednesday, and she while trying to reason her out of her room in order to get her to tell me what was wrong (and so I could watch her carefully), the phone rang from the boys’ school. The principal informed me that Hoss had run away from the property and that the police had to be called. She expressed her intention of keeping Hoss in the school building under the care of his gang (principal, VP, counselor, school psychologist, special ed team members, whoever) until something close to normal pick up time. She wanted to let me focus on Princess without needing to also watch Hoss. A few minutes later, the school called again, saying that the police were requiring me to come. In the time it took me to dry my tears, get my shoes on, close up the house and get myself and my daughter into the car, the police officer called to exhort me to get to the school. I arrived and was judged harshly by an officer who was aghast that I was initially not going to come pick Hoss up, who said he was taking Hoss to the emergency room because he had expressed a desire to end his life. Despite the professional opinions of the psychologist, counselor and school principal who administered the suicide threat assessment (a group who understand that his “I hate my life. I wish someone would just kill me” is not actually a true suicidal ideation), the officer took my son to the hospital in a patrol car. I was not allowed to leave until the mobile crisis team dispatched by the county arrived to speak to me. After some begging on my part, the officer allowed the counselor to go to the ER until my husband could get there.  The social worker and psychiatrist at the ER released my son within a few hours, noting that he was not a threat to himself or to others.

I am playing phone tag with my prospective new doctor, in hopes of getting an appointment so I can tell her about the mounting crises that make up my daily life and so I can try to get some relief. I called her on Thursday, but missed her return call at lunchtime on Friday. I called Friday night and left my work number as well as my cell and home, and have not heard back, so I am calling again. The mobile crisis team last Wednesday (a pair of neo-hippies who meant well but had nothing to offer me that I didn’t already have in place) listened to my account of the things that are happening and the things I am going to try to mitigate the turmoil, and they told me that I am doing all the right things. But doing all the right things does not seem to be making anything get better. I shudder to think of what our lives would be right now if I were doing the wrong things.

The energy it takes to get through my day is increasing. The reserves I have are decreasing. Something has got to give very soon.

It is not a good thing when a police officer calls to ask how quickly I can be at the school to address the expressions of self-harm that Hoss verbalized when being brought back.

It is not a good thing when the social worker at the pediatric ER recognizes our family on sight.

It is not a good thing when the mobile crisis team is called in.

There are good things. It was a good thing when the staff took Princess (who had to come with me, since she is not safe to be left alone) to a conference room and fed her lunch while I spoke with the principal and the police.

It was a good thing when the counselor agreed to accompany my son when the officer insisted upon taking him to the ER.

It was a good thing when the school psychologist and the principal spoke of my dedication to my children’s safety and mental health, in an effort to make the officer understand that Hoss was not actually a danger to himself.

It is a good thing when I alerted the school that Hoss had been released to come home, and their response to asking if he was allowed back tomorrow was, “Yes! We want him here and expect to see him first thing in the morning.”

It is a good thing that I had already scheduled a family therapy session for 6:00 this evening.

I desperately need more good things.

If one piece gets out of place, the entire structure may fall into a heap.  Houses made of cards are fragile, meticulously created.  Her queen of heart locked inside, protected.

She doesn’t see the fright, or see the scars that weren’t healing in her own daughter.  She can’t reach me, she can’t try.  Not because she doesn’t love me, but to do so would be to open the lid she’s had slammed shut for 50 years.  Without knowing, she gave me the tools to fight my own battles.

For years I’ve tried to do my part, overlook the sickness, overlook my own needs.  One sided relationships are very difficult to maintain.  When it was just me, it was a lot easier.  Now that I’ve got my own family with my own heartache, there hasn’t been as much room for me to serve her.

I love her, I admire her, I am grateful for her.  I just can’t give any more of myself or I’ll have nothing left for my own life.  You can only tell someone you love them, you appreciate them so many times before you realize that it won’t make a dent and at some point you have to let go.

For years I lived by her definition of good, I followed her advice, her suggestions.  I did what she told me to do and when I wasn’t with her, I’d hear her voice in my head.  She was my internal thermometer to lead me to the right path.  Not realizing it at the time, I was trying to gain her love and acceptance.

She didn’t mean to hurt me; she froze me out because that’s the only defense she had against the things that were too hard for her to see.

As her daughter, I thought it was up to me to try and repair the sins of the past.  To be the strong woman that she aspired to be, the woman that desperately wanted to let herself feel and give love, to live her life.

Nothing was safe for her, everyone and everything had an agenda, and that agenda was to hurt her.

I’d give anything to fix that in her, anything.  I thought for years that was my purpose, to fix her.  My choice, not hers.  She never asked for help, to do so would mean defeat in her eyes.

Before I ever fully understood any of this, I’d absorbed enough of her fears and problems that eventually set me up as a candidate for the same abuse that she experienced.  This was not her goal, I know this now.  The things we try to hide are projected onto others.

I certainly don’t blame her for that.  Not now.  For a while I did, I blamed her for not loving herself enough to get out from under her mountain of abuse and mental illness.   When I became a Mother myself, I grew even angrier that she didn’t think we were worth fighting for.

She fought for us, but in her own way.  It’s good to remember that when people love us, it won’t always look the way we expect it to.  It doesn’t mean they don’t love us.  It means their way of loving just looks differently than the way we love.

When I finally realized she did the very fucking best that she could, with what she was given, I was able to see her outside of the injuries.  To see her for the beautiful, smart, creative, loving and amazing person she is.

My strength is her strength, my compassion is her compassion, my love is her love working through me.  She succeeded in making me stronger than she was, to question, to reach.  I see her more clearly now than I ever did before.  Still unable to convince her how amazing she is, no matter how many times I tell her or write to her.

Maybe she meant to cover more ground, to be more and do more.  I know I’m making mistakes that my children will one day be hate me for.

It doesn’t mean I didn’t try, or that I don’t love them.

No, that doesn’t mean that at all.

Today was not one of her days in group therapy, now that she has dropped down to three days per week. Last night she told the doctor she was mostly feeling better, fewer thoughts of hurting herself and more ability to keep the thoughts in perspective and talk herself down when the thoughts do come. Tonight the doctor insisted that she be evaluated by the ER doctors before being allowed to come to group tomorrow.

She says she feels safe calm and comfortable when she is in the hospital, but she does not want to be away from home and back in an inpatient program. She says she feels calm and comfortable when she is in group. She says she feels calm and comfortable when she speaks with her LCSW on weekends. She says she feels calm and comfortable at home. At school, she usually feels calm and comfortable at the beforecare program, and the aftercare program, and first period religion class, and second period math class and third period social studies and at lunch.  During these times she can handle feeling sad or anxious or confused when those feelings come.

She does not feel this at recess. Her friends with whom she eats lunch like to play ball, which she does not.  She feels that she does not have a place or an activity or a presence that feels calm and comfortable.  She cannot or will not articulate whether her afternoon classes make her feel tense and uncomfortable.

Inpatient programs and intensive group therapy and one-to-one counseling sessions are not helping her navigate her life as it stands right now. I want her to be safe, but I do not know what tools she needs to make this happen. I’ve spent too many hours or days or weeks being the one to figure out the next move and letting everyone else know what needs done, but those solutions are not working and I no longer have the tools to figure out the next move.

When we have weathered this crisis, I am going to speak to my own doctor. I am going to request that he write me a prescription for an SSRI, but not the one I used previously because it made me tired and nauseated and I think that there are others that can help me. I am the mother of two (or maybe three) special needs children, and the wife of a man who forgets that he is not the only person with a stressful job, and the person at our office who takes care of the administrative side of the governance functions as well as taking care of the people who needs to be coddled. I can no longer be all those things without some help.

Stop punishing me with your perceived notion of what is right, and what is wrong.  Step outside of that head of yours for a little while and ponder the vast reaching capacity of our humanity.

Or, just do the dance, receive the accolades as you were taught to know that you are loved.  Keep reaching outside of yourself to find what you think you need.  Keep staying stuck where you are when you know your capacity for greatness beckons you to meet it.

Empty buckets lined up at your door, waiting for the love you know you deserve because you did everything right.  Years gone, spent on trying to please them and not yourself.

When people hurt us, does it matter any more or less if we are biologically connected to them?  Who made that rule that we have to go down with a sinking ship just because we’re family.

I used to be as you are, loyal and blind.  The years taught me to see things differently.  My experience, my road, my decision to decide who and what I will welcome into my life.

Didn’t realize you had the choice?

Yes, you do.

Perhaps you’ll hold on to this ideal until you are old, that’s ok if you do.  Perhaps you’ll begin to turn down the road that tells you to leave behind everything you’ve ever known and loved.

I like to believe that is the road where we find our true selves.  The uncomfortable kind with rocks and pebbles, no water or a friendly familiar face.  This is the road to find out who we really are.  The answers are not always in what we find the most comfortable.

I love you and I always will.

Please try not to judge me for the things that I have to do as I travel along my path, just because you do not believe them to be good and right.  Just love me and try to understand that there is always more to a picture than what you can see, and that sometimes your eyes play tricks on you.

Lastly, I miss you.

Tonight was back to school night at Princess’s school. It was not an easy night, since I didn’t know what to expect from other parents or from the teachers regarding Princess. Many of the parents seem not to know that anything has gone wrong. The only parents with whom I talked about her recent hospitalization were the parents of one of the girls who reported to the counselor that she was talking of stabbing herself. I thanked them, and their daughter, for starting the process to getting better. I tried to hold back the tears, but…well, that isn’t so much an option for me sometimes. I apologized for putting their twelve-year-old daughter in such a tough spot.

My tears brought some tears from this girl’s mom. She and her husband admonished me for apologizing, and said they are keeping Princess in their prayers. They wanted to pass along to their daughter our appreciation for having done the right thing. She told me that her sister had struggled with depression and talked of suicide, and that her husband lost a friend to suicide.

I still feel like a shell of myself. I’m sleeping more than typical yet not feeling rested. I eat because I know I must, not because I have a taste for it. Our priest, the school staff, Princess’s therapist, the executive assistant for my department are keeping a close eye on me, I think, not sure if I may shatter at any moment. But for Princess I am holding it together, I take deep breaths and I focus on how to move forward. One small step at a time.

When I picked Princess up from her aftercare program on Tuesday, I had a message that the school counselor wanted to see me. Princess and I gathered her things and sat down in the counselor’s office to talk. The counselor relayed that another student came to her to say that Princess had indicated that she was planning to bring a knife to school for the purpose of stabbing herself or cutting her throat. She’s never articulated a plan before, and never expressed thoughts so boldly violent. The counselor advised me that she would need written confirmation from some mental health professional regarding Princess’ abililty to return to class.

We made an appointment with the therapist, and Princess was vehement in saying she did not want to go back to the hospital. She later had an outburst that culminated in her locking herself in the bathroom, refusing to speak to me, and I told her through the door that if I could not get the key to work, I would call 911 and have them break the door down and take her to the ER in an ambulance. She came out, and finally admitted that her thoughts were too overwhelming to handle alone, and she thought she needed to go back to the hospital.

We arrived at the pediatric ER around 2:00. We met with the intake nurses and pediatrician and social worker. We waited for word about which hospital had a bed and would accept her into the program. I called and texted my husband (who was home with the boys) and my parents and my siblings with updates through the night. The food service people delivered Princess’ dinner to the adult ER, so it was cold by the time we hunted it down, but she ate it anyway. They fixed another dinner for her, so I ended up getting to eat something, too. The ambulance transport came just before midnight. I took my car and agreed to meet them at the hospital.

About halfway to the hospital, my car blew a tire. I sat at the side of the highway, sobbing so hard I thought I would vomit. My  husband called the pediatric ER staff, who called the transport company, who contacted the ambulance driver to  have him come back to get me. Another bus from the same transport company arrived a few minutes after we did, so the drivers kept me distracted with their chatter. I barely remember filling out the paperwork for the intake. The coordinator on the unit asked me if I had a ride home, and I asked her to help me call a cab. She did one better- she arranged for a transport voucher for me, since I wasn’t sure I had enough cash on me to pay for the 40 minute ride home.

I got about 3 hours of sleep before taking the boys to school and coming into the office. My boss is wonderfully understanding and supportive, and is allowing me to make my schedule day by day depending on what I feel I need. I don’t know what it is I need, though.

I am still standing, and I know that Princess is getting the help she needs. This is a different hospital than the one she was in during May. That program seemed to work then, but the doctor’s willingness to dismiss my suspicions of a biploar disorder bothered me. This hospital seems more open to the possibility that there is more going on than her anxiety/depression. And we will once again find our light at the end of the tunnel

As last school year rounded toward its close, Princess had a significant downward spiral.  She began to have thoughts of self-harm and a rising number of anxiety attacks. I got a call from the school nurse on a Thursday afternoon in late May telling me that Princess had tried to choke herself.  Twenty-four hours later, she and I were both sitting in a hospital room as we waited for a placement in a pediatric psychiatric facility.  She checked in on Saturday and checked out the following Friday, but did not return to school until mid-week, and only for the non-pressure events of the end of year carnival and final school day Mass.

We enrolled Princess in an intensive outpatient program over the summer, to deal with her anxiety and further develop both her coping skills and her socialization with her peers.  Upon the advice of the medical staff at the hospital, we took her off of her ADHD medication (stimulants often exacerbate anxiety disorders) and increased the dosage of her anxiety medication. While the journey is far from over, she did learn to identify the anxiety-provoking situations and ways to keep them in proper perspective and cope with them in the best way she can.  Much of what she has learned hasn’t been put to the test yet, but she has been more cooperative at home and less likely to freak out on her brothers (which is no small feat, given Hoss’ potential for anger outbursts as a result of his mood disorder).

I remain nervous.  While the elimination of the stimulants for the ADHD is likely a good idea (the hospital staff noted Princess’ ability to focus on her work without the meds, leading to a conclusion that her previous issues may have been driven by anxiety instead of inattention), it has been close to impossible to address the anxiety created by being in middle school and dealing with the school day.  Middle school kind of sucks, even for a “normal” twelve year old.  Kids can be cruel, either by intent or by ignorance.  Add an anxiety disorder and some established socialization issues to that mix, and it’s going to be a hard road for my baby to face.  And I am once again helpless to make it OK.